Health Care Manager Interview

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18 Biotechnology and Bioengineering

Learning Outcomes After reading this chapter, you should be able to: • Describe current issues in biotechnology and bioengineering, including athletic and cognitive

enhancements, stem cell research, cloning, genetic engineering, and genetically modified organisms.

• Draw connections between the ethical challenges of biotechnology and ethical issues related to abortion, animal welfare, and personal privacy.

• Examine the difference between a therapy and an enhancement, in connect with various applications of biotechnology and bioengineering.

• Apply consequentialist arguments about costs and benefits to bioengineering and biotechnology. • Critically examine moral objections to “playing God” and the idea of the “wisdom of repugnance.” • Defend a thesis about biotechnology and bioengineering.

For more chapter resources and activities, go to MindTap.

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F or two decades, Jan Scheuermann has suffered from a degenerative brain disease that has left her paralyzed from the neck down. In 2012, however, a revolutionary new technology allowed Scheuermann to use a robotic arm to feed herself for the first time

in years. By implanting special electrodes in Scheuermann’s brain, her doctors were able to create a “brain-computer interface” and connect it to the robotic arm. With practice, Scheuermann learned to control the arm using only her thoughts. This technological feat might sound like science fiction. But it is part of a set of rapidly advancing technologies produced by engineers and doctors who are finding ways to cure disease and improve human capacities. Scheuermann’s skill at working with the brain-computer interface improved so much that by 2015, she was able to control a flight simulator through this neurosignaling technique.1 Scientists have been able to expand the use of brain-computer interfaces in amazing ways. Robotic exoskeletons—devices that allow paralyzed people to stand and walk—have been controlled through mind-machine interfaces. In 2014, Juliano Pinto, a paraplegic, controlled a robotic exoskeleton and kicked a soccer ball at the opening of the World Cup in Brazil.2

Scientists are working on a range of technologies that aim to improve the lives of disabled people. For example, they are developing artificial eyes and other devices that allow blind people to see, including so-called bionic eyes, retinal implants, and cameras that bypass the eye and interface directly with the brain’s visual cortex.3 Other surgeries and interventions allow us to radically alter our bodies, including, for example, sex reassignment surgery. In the future, regenerative medicine and genetic interventions may be able to extend our life spans, screen out deadly genetic mutations, or allow us to grow replacement organs. Performance- and mood-enhancing drugs may make us stronger, improve memory and concentration, and help us achieve better emotional health. Other biotechnologies may make it possible to extend our physical capacities—to walk, run, or swim—as the human body has never done before.

Jan Scheuermann feeds herself using a robotic arm attached to a brain-computer interface.

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While many emerging biotechnologies have obvious therapeutic applications that will benefit people with diseases and disabilities, some worry that these technologies will be abused in ways that are unethical. Others argue that a new form of humanity is looming on the horizon—one that is genetically, chemically, and mechanically enhanced. Some view the “transhuman” or “posthuman” future as a positive development; others worry that we are not wise or virtuous enough to properly handle these new technologies.

Consider, for example, the speed and variety of recent advances in mind-computer interfacing. It is now possible to wire one brain to another to create “brain-to-brain communication.” For instance, a volunteer used his thoughts to trigger a muscle movement in the finger of another volunteer and played a video game using the other person’s fingers.4 In another experiment, one rat controlled the actions of another rat by way of implants connecting the two animals’ brains.5 Harvard researchers have connected human brain waves—detected by electrodes placed on the human’s skull—to the nerves of a rat so that the human subject is able to make the rat’s tail move by thought power.6 While such experiments raise concerns from the standpoint of animal ethics, they also suggest other moral issues. What if biotechnology and bioengineering could be used in ways that provide control over other human beings? Some oppose human cloning with that worry in mind; the idea of engineering or creating human beings for the purpose of organ harvesting or other usages is morally repugnant. We might worry about so-called mind-hacking on similar grounds: there is something morally repellant about reading the thoughts of another person or manipulating their thoughts. And yet, there are obvious therapeutic benefits to mind-computer interfacing: paralyzed or brain-damaged people could communicate and interact in new ways. New technologies not only create new therapies but also new ethical worries. A primary concern is that, in our pursuit of medical advancement, we will lose sight of those features of humanity that give life its worth and dignity.

Among the technologies that we ought to think carefully about are reproductive technologies. Scientists are now able to create a human embryo from three different “parents,” by combining mitochondrial DNA from one mother with regular DNA from another mother along with a father’s contribution; and in the United Kingdom, scientists have been permitted to do research involving human gene editing.7 These technologies have potential therapeutic benefits. The three-parent process would provide a remedy for diseases connected to mitochondrial DNA. Gene editing could help delete genetic codes that result in disease. We seem to be on the way toward producing “designer babies,” even if the potential for designing our offspring is not yet a reality. These technologies may produce good consequences, which utilitarians would applaud; or they may be decried as a violation of ethical ideas associated with the natural law tradition, which are damaging to human dignity.

Biotechnology can be broadly defined as the manipulation of biological systems and organisms through technological means. Biotechnology includes performance-enhancing drugs, stem cell research, genetic engineering, cloning, and genetic screening. These technologies can be applied in human reproduction to select or even engineer desired offspring. They can also be applied to animals, in scientific breeding practices to increase meat production. And plants grown for food can be genetically modified in ways that improve crop yields. Bioengineering applies biological science to design machines and alter biological systems for a range of purposes, including the use of machines to

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supplement or enhance biological organisms, as in the case of the brain-computer interface discussed previously.

Some biotechnologies produce strikingly therapeutic effects, for example, giving paralyzed people the ability to feed themselves. A therapy is an intervention that helps restore normal function to an organism that is suffering from an impairment due to disease or injury. But other technologies may be viewed as enhancements, which may be seen to give some people fair, or unfair, advantages over others. An enhancement is the result of a technology that provides better than merely normal function. One of the ethical questions to be discussed here is whether anything is wrong with enhancements. While we might accept such uses of technology out of respect for individuals’ rights to control their own bodies, some biotech enhancements appear to raise serious ethical questions about what is “natural” and about the value and nature of human life.

Current Issues Athletic and Cognitive Enhancement Steroid use by athletes who want to bulk up muscle and build strength is an enhancement rather than a therapy. There have been a number of controversies regarding the use of performance-enhancing substances by some of the biggest names in sports, such as baseball superstar Barry Bonds, Olympic sprinter Marion Jones, and tennis star Maria Sharapova. In 2013, cyclist Lance Armstrong admitted that he had used performance enhancements, including blood doping (a procedure that artificially increases the number of red blood cells in the body), in his seven triumphs in the Tour de France. Most athletic organizations view performance enhancements as immoral, undermining fair play and allowing some athletes with sufficient money and connections to buy their victories. But consider the case of athletes such as Oscar Pistorius, who runs on artificial legs—carbon- fiber blades. Should those athletes be allowed to compete against non-impaired athletes? After some controversy, the International Olympic Committee permitted Pistorius to run the 400-meter race in the 2012 London Olympics. Critics complained that Pistorius’s prosthetic legs gave him an unfair advantage. Scientific American examined the issue and concluded that Pistorius used less energy due to the elastic action of the blades.8 His lower “legs” are lighter than those of other runners, and they do not tire. On the other hand, Pistorius must compensate for the light springiness of his blades by bearing down on his prostheses in a way that no other runner must do. In 2016, the issue of blade-wearing athletes was focused on Markus Rehm, who is called “the blade jumper.” One of Rehm’s legs was amputated, and he competes in the long jump by leaping off a blade. Rehm’s jumps have reached 8.4 meters, a distance that would have won a gold medal in the 2012 London Olympics. In 2016, he was asked to compete in the Rio Olympics. The question of whether Pistorius or Rehm obtains an unfair advantage is not easy to answer. The distinction between therapy and enhancement is vague. Are these blades a therapeutic treatment, or do they enhance abilities in unfair ways?

Biotechnology creates amazing new opportunities and unprecedented ethical challenges.

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There is no denying that therapeutic technologies can be used or abused in ways that enhance performance. One controversial development is in the field of so-called cognitive enhancements or smart drugs. Drugs such as Ritalin and Adderall, which are prescribed for diseases such as ADHD, can be used by healthy people in ways that may improve performance at school and at work. It is illegal to use these drugs to enhance performance in this way, and critics warn that such nontherapeutic use is addictive and dangerous. At least one suicide has been connected with abuse of Adderall.9 But defenders argue that these drugs can provide an advantage in highly competitive fields, such as academia and business. Others argue that smart drugs are less like steroids than they are like caffeine or nicotine. In any case, there is no clear proof that such drugs actually work to consistently improve cognitive performance. “As useful as they may be during the occasional deadline crunch, no study has linked Ritalin or Adderall use in people without ADHD to sustained increases in things like grades or performance reviews.”10

Nevertheless, other non-pharmaceutical technologies have been developed that purport to stimulate cognitive ability. One such technology is transcranial direct-current stimulation—the application of electric current to the brain. This technology has therapeutic applications, for example, treating depression or helping cognitive recovery after a stroke. But apparently electric stimulation of the brain can also be used to enhance the cognitive abilities of healthy individuals. Some studies suggest that transcranial stimulation can aid memory and learning, producing, for example, a greater capacity to learn a new language or mathematical skill.11 Would it be ethical to use such a technology to enhance your ability to learn new information?

Stem Cell Research An important current issue in bioethics is stem cell research. Stem cells are found in bone marrow and in other parts of the body. These cells are of interest for biomedical research because they have not yet developed into specific skin, muscle, or other types of body cells

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and tissues. In recent years, several public figures have made public appeals for the funding of stem cell research, citing its potential for treating or curing certain serious diseases. For example, Mary Tyler Moore, who has type I (insulin-dependent) diabetes and chairs the Juvenile Diabetes Foundation, brought children with this condition to testify in hearings before Congress. These children are not able to produce enough insulin to change nutrients into the energy needed for life; they must monitor their blood sugar levels and inject manufactured insulin. Other advocates hope that stem cell research could lead to a cure for Alzheimer’s disease. In addition, the actor Michael J. Fox has promoted stem cell research as a possible cure for Parkinson’s disease, a condition he lives with. And Superman star Christopher Reeve lobbied during his lifetime for stem cell research as a possible treatment for spinal cord injuries like his own.

Stem cell research is part of the field of regenerative medicine. One long-term goal of such research is to produce new cells, tissues, and organs that can be used to treat disease or injury. Certain stem cell therapies have been around for some time. One example is transplanting bone marrow stem cells to treat certain forms of leukemia. Another more recent example is the extraction from cadavers of certain parts of the human pancreas for an experimental treatment of diabetes.12

In 2012, scientists were able to find a way to grow a replacement windpipe for a patient with a tracheal tumor. They induced stem cells from the patient’s own bone marrow to grow on an artificial windpipe scaffolding, which ensured that the plastic scaffolding would not be rejected by the body’s immune response. The stem cells went on to develop into the kind of tissue that is found in normal windpipes. The patient recovered with the plastic scaffolding in place, the stem cells developing into the appropriate form of tissue.13 A similar procedure has been employed to grow a replacement windpipe for a two-year-old girl born without a windpipe—the youngest person ever to undergo the procedure and the first in the United States.14 Unfortunately, the child died of complications in July 2013.15 More recently, scientists have been able to grow “organoids” from stem cells—tissues for rudimentary organs such as intestines and kidneys.16

The most potent, flexible type of stem cells are embryonic stem cells, or the undifferentiated cells of the early embryo in the first weeks of development, called a blastocyst. In human beings, these cells remain undifferentiated for approximately five to seven days after an egg is fertilized. They can be removed and placed in a culture where they will continue to divide, becoming the cells from which all of the body’s organs develop. However, once removed in this manner, these cells can no longer develop into a fetus.

In the case of these embryonic stem cells, researchers hope to control the process of differentiation in order to provoke the cells to become, for example, the insulin-producing beta cells of the pancreas or neurons for the treatment of spinal cord injuries. Stem cells themselves cannot be directly implanted into the pancreas, however, because they can cause cancerous tumors to develop. Thus it is necessary to take steps to direct the development of the cells, to ensure they are effective and not harmful.

Stem cell treatments present many practical challenges, such as efficiently obtaining the cells as well as directing and controlling their specialization. Some researchers have pointed out that in the case of some diseases, such as Lou Gehrig’s disease (amyotrophic lateral sclerosis, or ALS) and other autoimmune diseases, replacing damaged cells may not help because the cellular environment is the problem, and any newly added cells could

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become damaged as well. In these cases, the source of the problem would probably need to be addressed before regenerative stem cell treatments could be effective.17

Embryonic stem cell research has generated substantial political and ethical controversy in recent years. Among the central ethical issues is the moral status of the early embryo. Those who believe that a human being exists from the time of conception also hold that the blastocyst—although a ball of cells smaller than a grain of sand—has the full moral status of a person. Therefore, they believe it wrong to interrupt the development of such embryos, even to save another life. (See Chapter 11 on abortion for the arguments regarding the moral status of the embryo.) Supporters of stem cell research, however, point out that leftover embryos now stored in fertility clinics (approximately half a million are now frozen in the United States) could be used because they are often otherwise destroyed, and using these embryos could do some good. New techniques have also been developed to “reprogram” adult stem cells to behave like embryonic stem cells, which may defuse some of the controversy.18

Cloning A separate but related issue is cloning. In 2014, scientists successfully created human embryo clones from adult human cells.19 The purpose of this research is ultimately aimed at creating embryonic stem cells from these clones that could be used in regenerative medicine. We are not yet at the stage of full-blown reproductive cloning—indeed, many have questioned the morality of producing human babies through cloning technology. But the ethical questions are complicated, even at the stage of embryonic clones. Is a cloned human embryo a person? How does our thinking about cloned embryos connect with our thinking about other embryos created by natural reproductive techniques?

A clone is a genetically identical copy, produced asexually from a single living being. Since the birth of Dolly the sheep at the Roslin Institute near Edinburgh, Scotland in March 1996, people have wondered whether it also would be possible to produce humans by cloning. Dolly was a clone or generic copy of a six-year-old ewe. She was created by inserting the nucleus of a cell from the udder of this ewe into a sheep egg from which the nucleus had been removed. After being stimulated to grow, the egg was implanted into the uterus of another sheep, from which Dolly was born. Dolly was produced from a somatic cell of an adult sheep with already-determined characteristics. Because the cells of an adult are already differentiated, that is, they have taken on specialized roles—scientists had previously assumed that cloning from such cells would not be possible. Now, for the first time, producing an identical, although younger, twin of an already existing human being seemed possible.

The type of cloning described earlier is called somatic cell nuclear transfer (SCNT) because it transfers the nucleus of a somatic or bodily cell into an egg whose own nucleus has been removed. Cloning can also be done through fission, or cutting, of an early embryo. Through this method it may be possible to make identical human twins or triplets from one embryo.

In recent decades, many higher mammals have been produced through cloning, including cows, sheep, goats, mice, pigs, rabbits, and a cat named “CC” for “carbon copy” or “copy cat.” CC was produced in a project funded by an Arizona millionaire, John Sperling. The company that he and his team of scientists established, Genetic Savings and Clone, was based in Sausalito, California, and Texas A&M University at College

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Station, Texas.20 In 2004, it charged $50,000 for a cloned cat and $295 to $1,395 to store genetic material from a cat. Two kittens, Tabouli and Baba Ganoush, who were cloned from the same female Bengal tiger cat, were displayed at the annual cat show at Madison Square Garden in October 2004. According to the owners, the kittens have personality similarities as well as differences.21 Genetic Savings and Clone shut down in 2006.22 However, Sperling established a new company, BioArts, in 2007. He cloned a dead pet dog, producing three puppies born in February 2008. Sperling said that “cloning techniques had become more efficient over the years” such that “1 percent to 4 percent of embryo transfers now result in a puppy.”23 Cloned animals have themselves produced offspring in the natural way. Dolly had six seemingly normal lambs. Unfortunately, animal cloning has not always been efficient or safe. In the case of Dolly, for example, 277 eggs were used but only one lamb was produced. Moreover, cloned animals also have exhibited various abnormalities. In February 2003, Dolly was euthanized because she had developed an infectious and terminal lung disease.

Some cloning proponents argue that cloning animals might help farmers to more efficiently produce livestock herds. Others argue that cloning could provide a way to save endangered species. Critics argue against animal cloning by appealing to beliefs about animal welfare and animal rights (see Chapter 17). These critics argue that animal clones have high rates of abnormalities and that the risk of animal suffering and illness outweighs potential benefits.24

Given the controversy surrounding animal cloning, it is not surprising that human cloning is subject to even more scrutiny. However, proponents of human cloning point to potential benefits for both therapeutic and reproductive goals. Therapeutic cloning is cloning for medical purposes. One therapeutic use of cloning might be in conjunction with stem cell therapy, to help avoid the immunological rejection by a patient’s body of “foreign” tissues or organs grown from stem cells. In this type of cloning, the nucleus of a somatic or bodily cell from the patient, such as a skin cell, would be inserted into an unfertilized egg that had its own nucleus removed. The egg would then be stimulated to develop into an embryo. The stem cells in this blastocyst would be genetically identical with the patient and tissue grown from them might not then be rejected by the patient’s immune system as foreign. The ethical issues raised by this type of cloning mirror those of stem cell research, especially the moral question of the status of the human embryo.

Reproductive cloning aims to produce a new human being who would be the genetic twin of the person whose cell was used in the process. Reproductive cloning is one of several reproductive technologies developed in recent decades. Among these are artificial insemination, in vitro fertilization, donated and frozen embryos and eggs, and the use of surrogate mothers. Although these other methods of reproduction have been accepted, there is almost universal objection to reproductive cloning, even among those countries that allow and support stem cell research or therapeutic cloning. Some countries have laws prohibiting reproductive cloning while still actively supporting therapeutic cloning. Japan, China, Singapore, and South Korea have similar laws. However, Germany, Austria, France, and the Netherlands have banned both types of cloning. Countries in South America, the Middle East, and Africa also have a diversity of regulation. In the United States, there is no federal law banning cloning, but several states have banned the practice. Meanwhile, one of the leading scientists in the field, John Gurdon—the 2012 co- winner of the Nobel Prize for medicine—has predicted that we will be able to safely clone

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human beings within fifty years.25 Gurdon suggests that one reason to develop such techniques would be so that parents of children who die could replace their lost child with a copy. Gurdon further suggests that just as the public has gotten used to in vitro fertilization, the public will eventually come to accept the practice of reproductive cloning.

Others worry that such concepts of “replacing” individuals through cloning could lead to a devaluation of human life and a mechanistic “mass production” of babies. They point to the growing acceptance of paying surrogate mothers to bear children and argue that we are already commercializing reproduction, allowing (often wealthy and Western) couples to “rent” the wombs of women (often poor and in the developing world). When combined with cloning, such practices might seem to spring from the dystopia of Aldous Huxley’s novel Brave New World, in which the production of children was outsourced and managed for sinister eugenic purposes. Huxley’s novel is often invoked as a cautionary tale about the totalitarian dangers of cloning and technologized reproduction.

Genetic Engineering and Genetic Screening Developments in modern genetics can create new ethical problems. The controversial history of the eugenics movement mentioned previously is an important concern. Eugenics is the science of improving the genetic components of a species. Livestock breeders have worked for centuries to create such genetic changes in animals. But eugenic practices become more problematic when attempted with human beings, especially given the history of human eugenics efforts, which includes forced sterilizations and abortions and other practices that violated people’s liberty in the name of producing good offspring. There is a long history of eugenic projects, going back to Plato’s plan for breeding good citizens in the Republic. Eugenic laws were enforced in the United States in the early part of the twentieth century, including the forced sterilization of thousands of people deemed “mentally defective.” Nazi Germany took eugenic projects to another level of cruelty. The immoral effort to “purify” the Aryan race involved the killing of more than 200,000 people— many of them children—who were deemed disabled, degenerate, homosexual, or insane by Nazi doctors and therefore “unworthy of life.”26 Hundreds of thousands more were sterilized against their will. And eventually millions of people were deemed “unworthy” were slaughtered in the Holocaust.

For the most part, contemporary societies view eugenics as fundamentally immoral. But contemporary genetic research may open the door toward a different form of eugenic outcome—such parents selecting the genes of their children. We mentioned at the outset in a brief discussion of “designer babies” that it is possible to edit genes—and that three- parent combinations are possible, which eliminate defective mitochondrial DNA. Consider what decisions you might make if it were possible for you to engineer a “designer baby” or to screen out an embryo with an unwanted genetic mutation—and how those decisions relate to your ideas about the value of natural reproduction, your view of disability, and your ideas about harms and benefits.

One genetic manipulation process is known as preimplantation genetic screening, by which embryos with harmful or perhaps even simply unwanted genetic mutations can be selected out during the in vitro fertilization process. This seems like a prudent step to take, in cases where the risk of genetic diseases, such as Huntington’s disease, could be eliminated through a pre-implantation genetic test. But consider the controversy surrounding a Maryland couple—both born deaf—who opted to increase the likelihood that their child would also be born deaf. The couple (two women who had been together for

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eight years) sought out a sperm donor with hereditary deafness out of a conviction that deafness is not a disability and that they wanted to share deaf culture with their children. “A hearing baby would be a blessing,” one of the mothers said. “A deaf baby would be a special blessing.”27 After one of the women did, in fact, give birth to a deaf baby, some critics argued that the selection of a deaf donor was an abuse of genetic screening practices. But one of the mothers argued in reply that if black parents were able to choose black sperm donors, a deaf mother should be allowed to choose a deaf sperm donor.28

Many of the ethical controversies surrounding genetic engineering and screening have been intensified by the great progress scientists have made in recent decades in understanding the human genetic structure. The Human Genome Project, an effort to map the entire human genome, was completed in the summer of 2000 and its results first published in early 2001. The project found that humans have approximately twenty thousand genes—roughly the same number as most other animals—and helped scientists determine that “we have only 300 unique genes in the human [genome] that are not in the mouse.”29 However, although humans have approximately the same number of genes as a spotted green puffer fish, it is surmised that human capacity comes from “a small set of regulatory genes that control the activity of all the other genes.” These would be different in the puffer fish.30

Two entities competed in the race to map the entire human genome. One was a public consortium of university centers in the United States, Great Britain, and Japan. It made its findings publicly available and used the genome from a mosaic of different individuals. The other research was done by Celera Genomics, a private company run by Dr. Craig Venter. It used a “shotgun” strategy, with genetic source material from Venter and four others. Celera performed an analysis of the DNA—identifying where the genes lay in the entire DNA sequence—and in 2007 Venter published his entire genetic sequence.31 Although initially the cost to have one’s complete genome sequenced was quite high, the cost has dropped to under $10,000.32 A few companies, such as 23 and Me, have begun charging much less, sometimes less than a couple hundred for genetic screening, which can also tell you something about your ancestry.

Since the initial mapping of the human genome, various scientific projects have attempted to determine the precise role that hereditary elements, including the genes, play in human development, health, personality, and other characteristics. In this effort, one focus has been on individual differences. The human genome, “a string of 3 billion chemical letters that spell out every inherited trait,” is almost identical in all humans— 99.99 percent. But some differences, so-called genetic misspellings that are referred to as single nucleotide polymorphisms (SNPs or “snips”), can be used to identify genetic diseases. The SNPs give base variations that contribute to individual differences in appearance and health, among other things. Scientists look for differences, for example, by taking DNA samples of five hundred people with diabetes and a similar number from people without the disease and then look for contrasting DNA patterns.33 SNPs also influence how people react differently to medications. Some people can eat high-calorie and high-fat foods and still not put on weight while others are just the opposite. Some have high risks of heart disease, whereas others do not. With genetic discoveries based on the Human Genome Project and more recent efforts, one hope is that diets can be tailored to individual human genetic makeups.

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Since the early 2000s, an international consortium of scientists has been working on the “hapmap” project, a $100 million endeavor “to hasten discovery of the variant genes thought to underlie common human diseases like diabetes, asthma, and cancer.”34 Scientists have used the Human Genome Project map as a master reference and compare individual genomes to it. Some diseases are caused by single genes, such as that producing cystic fibrosis, but others are thought to be caused by several genes acting together.

Other efforts are directed to finding genes that relate to certain beneficial human traits. For example, some scientists are working on locating what they call the “skinny gene.” Using mice from whom a single gene has been removed, scientists at Deltagen, a company in Redwood City, California, have been able to produce mice that remain slim no matter how much they are fed.35 According to geneticist David Botstein, the impact of the Human Genome Project on medicine “should exceed that 100 years ago of X-rays, which gave doctors their first view inside the intact, living body.”36

Our growing knowledge of the human genome may lead to powerful new medical treatments but also raise new ethical questions. Consider, for example, gene therapies that could impact the growth of muscle. Myostatin is a hormone that curbs the growth of muscles. Gene therapies might be able to block myostatin, which could promote muscle growth. As a therapy this could be useful for treating muscular dystrophy or frailty in older persons. Myostatin mutations are already responsible for the development of a breed of cattle called the Belgian Blue that has huge muscles and very little fat. And some human beings have a myostatin mutation, which promotes muscle growth—a natural abnormality that has helped produce exceptional athletes, including a gold medalist in cross-country skiing.37 While myostatin treatments could save lives, there is also concern that athletes and other healthy individuals might purchase them to gain an advantage in competition or for cosmetic purposes. Such genetic enhancements might not leave traces in urine or blood the way that other performance-enhancing drugs do. However, in recent years the World Anti-Doping Agency has begun to develop new blood tests to detect so-called gene doping, including other genetic enhancements that allow the human body to produce extra red blood cells.38

Ethical issues have also arisen over new genetic screening procedures made possible by the genome map. While such screenings may benefit health, insurers and prospective employers might also use genetic screening to their own advantage but not necessarily to the advantage of the person being screened. Although the procedures may be new, the ethical issues are similar to those raised by other types of screening, including drug screening. While we may agree that athletes and airline pilots should have their blood and urine screened for the use of performance enhancements and recreational drugs, do we also agree that students or retail employees should be subject to similar screenings? Related to this is the question of whether insurance companies or employers should be able to obtain information about an individual’s genetic code. In 2013, scientists published the results of a study that showed that it was finally possible to identify individuals based upon an analysis of genetic codes in comparison with publicly available databases containing the genetic information of individuals whose genes have been sequenced.39 This technology could be useful for tracing out genealogies. But it could also raise privacy concerns, for example, among people who fear being stigmatized because of a genetic abnormality or disease.

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Genetically Modified Plants and Animals During the past few decades, a lively debate has sprung up in the United States and beyond about genetically modified organisms, or GMOs. While, strictly speaking, humans have been modifying the genes of plants and animals for centuries—through such practices as plant hybridization and selective animal breeding—GMOs are created through new biotechnologies such as gene splicing, radiation, or specialized chemicals. These technologies often change the genetics of plants and animals that humans grow for food, in an attempt to make them hardier, larger, more flavorful, or more resistant to drought or freezing temperatures. Although some of these traits could be established through traditional breeding methods, some could not, and a highly profitable new industry now revolves around creating (and usually patenting) these new forms of life.

Critics of GMOs argue that they open a “Pandora’s box” of potential risks to ecosystems and to human health. (In Greek mythology, Pandora’s seemingly minor act of opening a beautiful box releases a host of evils into the world.) In 2004, the National Academy of Sciences determined that, “genetically engineered crops do not pose health risks that cannot also arise from crops created by other techniques, including conventional breeding.”40 It is not the method of production that should be of concern, the NAS argued, but the resulting product. Nevertheless, there is much that the general public does not understand about so-called genetically modified food.

Strictly speaking, genetic engineering involves inserting a specific gene from one organism into another in order to produce a desired trait. In a broader sense, “nearly every food we eat has been genetically modified” as crops and domesticated animals have been bred by humans for centuries.41 Cross-breeding crops “involves the mixing of thousands of genes, most unknown,” and trying to select desirable mutations.42 In the case of some contemporary GMOs, such mutations are now often caused by “bombarding seeds with chemicals or radiation” and seeing what comes of it. For example, lettuce, beans, and grapefruit have been so modified.43

An increasing number of crops have been genetically modified in recent decades. A report of the International Service for the Acquisition of Agri-Biotech Applications concludes, “In 2014, the global area of biotech crops continued to increase for the 19th year at a sustained growth rate of 3 to 4% or 6.3 million hectares (~16 million acres), reaching 181.5 million hectares or 448 million acres.”44 According to the Non-GMO Project, “In North America, 80 percent of our foods contain GMOs.”45 The Non-GMO Project has spearheaded a campaign to certify foods that do not contain GMOs. In 2013, the grocery chain Whole Foods announced that it would label products that contain GMOs in its stores.46 While some are pushing back against GMOs, mainstream science tends to hold that these products are beneficial or at least not harmful. GMO crops are easier and cheaper to grow and can provide more food from less land. They may be engineered to survive the use of herbicides and insecticides or to be more resistant to pests. Critics argue, however, that herbicide- and pesticide-resistant crops will lead to more toxic chemicals in agriculture, which may have long-term negative impacts on the environment and human health. One article claims that the use of genetically modified crops has unleashed a “gusher” of pesticides.47 But proponents of GMOs explain things differently. One technique has inserted Bacillus thuringiensis (B.t.) genes into corn, which enables it to resist a devastating pest called the corn borer. With this mutation, the use of

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environmentally damaging herbicides intended to combat the corn borer can then be reduced.

Other benefits of GMOs include the possibility of engineering crops so that they contain more nutritional value. New strains of rice have been developed specifically to combat famine and to reduce a vitamin A deficiency that commonly causes blindness and other infections among the world’s poorest children. Plans for GMOs include “edible vaccines” in fruits and vegetables that would make them more easily available to people than injectable ones.48 Perhaps most significant for global public health, genetically modified foods offer a chance to “produce more food on less land—using less water, fewer chemicals, and less money.”49 And opposition to GMOs in the wealthy West may have negative consequences for developing countries where famine and malnutrition are serious problems. For example, opposition to genetically modified food has led Uganda to prohibit efforts to develop a fungus-resistant banana, even though fungus has seriously damaged its banana crop, one of its most important.50

At the same time, protests against genetically modified foods have increased, especially in Europe and Japan, but also in the United States. One significant concern is food allergies that could result from products containing new genetic information.51 Although some of the criticism may be based on ungrounded fears about new technologies, some GMO-related hazards may be real. There is some evidence, for example, that crops genetically modified for antibiotic resistance may transfer that resistance to humans who eat them raising serious health concerns.52 There is also evidence that herbicide-resistant crops may help create “superweeds” that require ever more toxic chemicals to try to control them. Neighboring non-GMO crops may become contaminated by GMO crops which has, ironically, allowed giant GMO producers such as Monsanto to sue farmers for patent infringement when pollen from GMO crops blows onto their land. It may well be possible to reduce some of these risks, for example, by creating sterile plants that do not produce pollen. But clearly we are in the early days of human experimentation with GMOs. So far, many of the dangers that people associate with GMOs have not materialized, but this does not prove their safety for humans and the environment.

For more chapter resources and activities, go to MindTap.

Legal and Ethical Issues A variety of legal and ethical issues arise in thinking about biotechnology and bioengineering. In general, there is a tension between valuing our liberty to pursue biotechnologies for their immediate utility, on the one hand, and concerns over the potential negative impacts of such technologies in the long run. Some consequentialists will argue in favor of the benefits of these technological innovations; others will urge caution, appealing to a “precautionary principle,” which holds that we ought to do our best to avoid risks and harms when exploring new technologies. There are also tensions between the liberty of individuals and groups to modify biology and concerns about the moral problems involved in such modification, including the risk of “playing God.” There is also a concern that new technologies will diminish human dignity by turning human beings into products that are created and engineered. One significant argument,

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associated with the work of bioethicist Leon Kass (whose work is excerpted in the Readings section of this chapter), is that there is a kind of wisdom in our repugnance for certain forms of bioengineering. When a new technology makes us pause and say “yuck,” we may be tapping into a deeper insight about human nature. Of course, others reject such repugnance as little more than taste and inclination without any deeper moral basis. Indeed, some theorists argue that what one generation finds disgusting is easily accepted by the next generation, as people get used to new norms and new ideas about what is natural and possible. We might organize ethical judgments about biotechnologies along a continuum from progressive to conservative. Progressives put great hope in the advantages of biotechnology, with some imagining embracing technologies that enhance human life, while imagining a radically altered transformation that could result in a transhuman or posthuman future. Conservatives are not so sanguine about the promise of biotechnological enhancement, even though they would likely admit that therapeutic applications of biotechnology are beneficial.

The following table provides an outline of moral approaches to biotechnology.

Athletic and Cognitive Enhancement The issues arising around athletic and cognitive enhancement involve the conflict between liberty and negative consequences. In terms of liberty, defenders of biotechnology will argue that individuals have a right to do whatever they want to their own bodies, a right to enhance their performance, a right to use technology to choose their own offspring, and a right to find ways to profit and benefit from technology so long as they do not hurt other people. Therapeutic technologies can be defended in terms of their immediate positive impact on impaired and disabled people. Those who want to use these technologies beyond mere therapy will argue that the benefits are obvious and that individuals should be free to take the risks that might be associated with the use of performance-enhancing drugs. Arguments along these lines might parallel ethical considerations regarding the use of other drugs, such as marijuana or nicotine. Defenders will argue that so long as no one else is harmed, individuals should be allowed to choose to use these substances because of a basic right to do what one wants with one’s own body.

Outline of Moral Approaches to Biotechnology Progressive Moderate Conservative

Thesis Embrace and explore the advantages of biotechnologies

Biotechnologies are neither all good nor all bad

Need for careful reflection about biotechnology (and prohibition in some cases)

Corollaries and Implications

Pro-enhancement; natural systems can be improved through human intervention; negative consequences outweighed by benefits/advantages;

Balancing need for therapy with desire for enhancement; precautionary principle employed to counsel prudence with regard to harms and benefits biotech

Anti-enhancement (although not necessarily opposed to therapeutic interventions); Strict risk-averse application of precautionary

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there are no inherent moral limits to human freedom to innovate through biotechnology; aspiration to transcend current limits

innovation; respect for autonomy and innovation balanced with recognition of stability of social and natural systems

principle; fear of “playing God” and eugenics; need to respect the inherent dignity of natural processes including aging, disability, and death

Connections with Moral Theory

Optimistic consequentialism; respect for Liberty

Moderate consequentialism balanced with respect for autonomy/dignity

Natural law; concerns for human dignity

Relevant Authors/Examples

Bostrom, transhumanism and posthumanism

Kass

On the other hand, critics will argue that the benefits are not obvious. Steroid use by athletes has been proved to produce long-term negative health effects. Athletes may need to be protected from competitive or organizational pressures to alter their bodies in ways that are not healthy. Indeed, the international agreements that prohibit the use of performance enhancements in sport are partly intended to benefit the athletes themselves. If steroid use were allowed, for example, there is a worry that there would be an “arms race” among athletes, which might increase performance but would result in serious health problems. Furthermore, critics of performance enhancements argue that these drugs and technologies create unfairness, as those who are willing to use these drugs (or those who can afford them) will have an unfair advantage over those who restrict themselves to developing their own natural talents and abilities. There is a worry, for example, that affluent students will benefit from smart drugs, giving them an unfair advantage over less fortunate students.

Furthermore, critics will argue that we may not yet understand the potential long-term impacts of these biotechnologies. Just as genetically modified organisms may produce food allergies and contribute to the growth of superweeds, so too, the use of performance enhancements may create future impacts that we might come to regret. Critics may also argue with regard to biotechnology and bioengineering in general that we are not wise enough or benevolent enough to be entrusted with technologies that could be easily abused. This is related to a naturalistic argument, which suggests that we ought to leave natural things alone and not risk dangerous perversions of nature.

Stem Cell Research As we have seen, ethical debate over stem cell research is often—but not always—rooted in the contentious moral debate about the status of the human embryo. In 2001, President George W. Bush introduced a ban on federally funded research using stem cells from new embryos, stating that, “[l]ike a snowflake, each of these embryos is unique, with the unique genetic potential of an individual human being.”53 In 2009, President Obama expanded the number of stem cell lines available for use and allowed federal grant money to be used for

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research on these lines. These stem cell lines are to be derived from excess embryos created in fertility clinics and donated for research purposes with the consent of the donor. (If not used in this way, these excess embryos would be thrown away.) In 2013, the U.S. Supreme Court overruled a lower court decision that would have prevented federal funding for embryonic stem cell research. The plaintiff in that case, Dr. James Sherley, said that his goal was to “emancipate human embryos from research slavery.”54

To overcome such ethical concerns about the status of the early embryo, some people have suggested that only adult stem cells be used in research. Adult stem cells exist in bone marrow and purportedly in other parts of the body such as the brain, skin, fat, and muscle. The therapeutic use of these cells seems to work in some situations, such as the case of the reconstructed windpipe mentioned previously. Adult stem cells have been used to grow different types of cells, including heart cells, which could be useful for treating heart disease.55 However, adult stem cells may be limited in their ability to develop into tissues. They may only be multipotent rather than pluripotent.

Nevertheless, some recent scientific developments suggest that researchers may find a way out of the moral impasse over embryonic stem cells. Several studies have found that the stem cells present in amniotic fluid (the fluid that surrounds the fetus in the uterus) can be used for many of the same therapies as embryonic stem cells. This would constitute a plentiful source of stem cells and would perhaps be less controversial than obtaining the cells directly from embryos. In 2012, the Nobel Prize for Medicine was given to two researchers, Shinya Yamanaka and John Gurdon (mentioned previously), whose work showed how mature cells could be “reprogrammed” into an immature state capable of growing into various kinds of tissue—a capacity that resembles the pluripotency of embryonic stem cells.56 Such new techniques may change the ethical conversation about stem cells, especially if it is possible to create therapies that use adult cells instead of embryonic cells. Such work would circumvent the complaints of those who view embryos as incipient human life that ought not be destroyed in the name of research. Scientists continue to make rapid progress along these lines. In April 2013, scientists announced that they had perfected a technique for creating and growing induced pluripotent cells that allows for successful cultivation of large numbers of these cells.57

Not all moral concerns about stem cell research, however, are narrowly focused on the individuality and potential personhood of the human embryo. Another significant concern raised, for example, in the National Academy of Sciences (NAS) recommendations for stem cell research is the possible creation of chimeras, or new creatures that cross species borders. The NAS guidelines prohibit research in which human embryonic stem cells “are introduced into nonhuman primate blastocysts or in which any embryonic stem cells are introduced into human blastocysts.” Furthermore, the guidelines maintain, “no animal into which human embryonic stem cells have been introduced such that they could contribute to the germ line should be allowed to breed.”58

The possibility of creating and breeding partially human or cross-species genetic mutants raises a number of serious ethical worries about how such creatures might be treated, about just how human such beings would need to be to deserve human rights and personhood, and, more generally, what it means for scientists to “play God” and create unprecedented new life forms. Such moral questions are not merely speculative or limited to the realm of science fiction. Some medical therapies already do include tissues and genes taken from animals. For example, pig heart valves that contain some human cells

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have been used to treat human patients with cardiac diseases. While recommending that these therapies and research programs be allowed, the NAS also recommended that: (1) chimeric animals not be allowed to mate because, if human cells invaded the sperm and eggs of an animal host, this could lead to the remote possibility of a being with human DNA being conceived in a non-human host; (2) human stem cells not be allowed to become part or all of an animal’s brain and not be injected into other primates because this could have the possible result of a human mind trapped in a non-human body; (3) embryos used in stem cell research should not be allowed to develop for more than fourteen days; and (4) women who donate eggs not be paid in order to avoid financial inducement.59

In 2007, a task force of the International Society for Stem Cell Research published its own guidelines for embryonic stem cell research. These guidelines were developed by ethicists, scientists, and legal experts from fourteen countries. Like the NAS recommendations, these guidelines do allow some research on chimeric animals—those that could carry human gametes—but only if such research passes the review of an oversight committee. The guidelines also affirm the fourteen-day limit for embryo development, arguing that it is not until this point in the development of a “primitive streak” that the embryo “has begun to initiate organogenesis.”60 The idea is that prior to that point, the embryo has not yet reached a point of development that would qualify it for moral concern—a claim that is connected to the discussion of the ethics of abortion (see Chapter 11).

Cloning Perhaps no issue related to biotechnology raises more ethical controversy than the prospect of cloning human beings. Although much of the reaction to cloning humans has been the product of both hype and fear, serious ethical questions also have been raised. One of the most serious concerns is that cloning might produce medical problems for the individuals produced in this way, just as it has in some cases of animal cloning. For this reason alone, we might raise ethical objections to human cloning. Some have pointed out, though, that fertility clinics have had broad experience in growing human embryos, and thus cloning humans might actually be less risky than cloning animals. However, moral objections to cloning are also based on other considerations.

One classic objection to human cloning is that it amounts to “playing God.” The idea is that only God can and should create a human life. Those who hold this view might use religious reasons and sources to support it, but although this looks like a religious position, it is not necessarily so. For example, it might simply suggest that the coming to be of a new person is a creation, rather than a making or production. According to this view, the creation of a human is the bringing into being of an individual, a mysterious thing and something that we should regard with awe. When we take on the role of producing a human being, as in cloning, we become makers or manipulators of a product that we control and over which we have some kind of power. Another version of this objection stresses the significance of nature and the natural. In producing a human being through cloning, we go against human nature. For example, in humans, as in all higher animals, reproduction is sexual. Cloning, by contrast, is asexual reproduction, and thus may be seen to go beyond the “natural” boundaries of human biology. Leon Kass, whom we mentioned earlier, is one of the strongest proponents of the view that in cloning someone, we would wrongly seek to escape the bounds and dictates of our sexual nature.

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According to another related criticism, attempting to clone a human being demonstrates hubris, an arrogant assumption that we are wise enough to know and handle its potential consequences. Tampering with a process as fundamental as human reproduction should only be undertaken with the utmost caution, this argument claims. Above all, we should avoid doing what unknowingly may turn out to be seriously harmful for the individuals produced as well as for future generations.

Those who defend human cloning respond to this sort of objection by asking how cloning is any different from other ways we interfere with or change Nature in accepted medical practices such as in vitro fertilization, for example. Others argue from a religious perspective that God gave us brains to use, and that we honor God in using them, especially for the benefit of humans and society. Cloning advocates also point out that in using technology to assist reproduction, we do not necessarily lose our awe at the arrival of a new being, albeit one who comes into being with our help.

A second objection to the very idea of cloning a human being is that the person cloned would not be a unique individual. He or she would be the genetic copy of the person from whom the somatic cell was transferred, the equivalent of an identical twin of this person, although years younger. Moreover, because our dignity and worth are attached to our uniqueness as individuals, this objection suggests that cloned individuals would lose the unique value we believe persons have. We might find that the difficulties that clones have in maintaining their individuality would be a more confusing and troubling version of the difficulties that identical twins sometimes face. For example, often identical twins are expected to act alike. The implication is that they do not have the freedom or ability to develop their own individual personalities. A related objection is sometimes expressed as the view that a cloned human being would not have a soul, or that he or she would be a hollow shell of a person. The idea is that if we take on the role of producing a human being through cloning, then we prevent God or nature from giving it the spiritual component that makes it more than a material body.

One response to this objection points out how different the cloned individual would be from the original individual. Identical twins are more like each other than a clone would be to the one cloned. This is because twins develop together in the same mother’s body in addition to sharing the same genetic code. Clones would develop in different uteruses and would have different mitochondria—the genes in the cytoplasm surrounding the renucleated cell that play a role in development. They would also likely grow up in very different circumstances and environments. Developmental studies of plants and animals give dramatic evidence of how great a difference the environment makes. The genotype (the genetic code) does not fully determine the phenotype (the genes’ actual physical manifestations). CC, the cloned cat mentioned previously, does not quite look like its genetic donor, Rainbow. They have different coat patterns because genes are not the only things that control coat color. They exhibit other differences. “Rainbow is reserved. CC is curious and playful. Rainbow is chunky. CC is sleek.”61 Although genes do matter, and thus there would be similarities between a human clone and the person who was cloned, they would not be identical. On the matter of soul, cloning defenders ask why could God not give each person, identical twin or clone, an individual soul; any living human being, cloned or not, would be a distinct being and so could have a human psyche or soul, they suggest.

Another objection to human cloning is that while any person born today has a right to an open future, a cloned human being would not. He or she would be expected to be like

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the originating person and thus would not be free to develop as he or she chose. The genetic donor (or his or her life story) would be there as the model of what he or she would be expected to become. Even if people tried not to have such expectations for the one cloned, they would be hard-pressed not to do so. Critics of this argument point out that while there might indeed be certain expectations for a clone, this undue influence is a possibility in the case of all parents and children, and thus a possibility that is not limited to clones. Parents select their children’s schools and other formative experiences and promote certain activities, perspectives, and tastes. Thus any child, cloned or sexually reproduced, would seem to run the risk of being unduly influenced by those who raise them or contribute to their genetic makeup.

Related to the previous objection to cloning is one that holds that cloned children or adults would tend to be exploited. If one looks at many of the potential motivations for cloning a person, the objection goes, they indicate that cloning would often be undertaken for the sake of others, rather than for the sake of the new cloned person. For example, the cloned child could be viewed as a potential organ or blood donor—a so-called “savior sibling”—or to “replace” a child who has died. A more far-fetched scenario might include making clones who were specifically produced for doing menial work or fighting wars. We might want to clone certain valued individuals, such as stars of the screen or athletics. In all of these cases, the clones would neither be valued for their own selves nor respected as unique persons. They would be valued for what they can bring to others. Kant is cited as the source of the moral principle that persons ought not simply be used but ought to be treated as ends in themselves, and such practices would seem to be condemned by Kantian ethics.

Critics of these objections could agree with Kant but still disagree that a cloned human being would be more likely than anyone else to be used by others rather than valued as an individual. Just because a child was conceived to provide bone marrow for a sick sibling would not prevent her from also being loved for her own sake. Furthermore, the idea that we would create and confine a group of human beings while training them to be workers or soldiers must presuppose that we abandon a host of legal protections against such treatment of children or other individuals. Equally far-fetched, these critics say, is the notion of a eugenic “brave new world” in which children are produced only through cloning.

Some people believe that if human cloning were widely practiced, then it would only add to the confusion within families that is already generated by the use of other reproductive technologies. When donated eggs and surrogate mothers are used, the genetic parents are different from the gestational parents and the rearing parents, and conflicts have arisen regarding who the “real” parents are. Cloning, objectors contend, would create even more of a problem, adding to this confusion the blurring of lines between generations. The birth mother’s child could be her twin or a twin of the father or someone else. What would happen to the traditional relationships with the members of the other side of the family, grandparents, aunts, and uncles? And what would be the relationship of a husband to a child who is the twin of his wife or of a wife to a child who is the twin of her husband?

Critics of these arguments respond that, although there is a traditional type of family that, in fact, varies from culture to culture, today there are also many different kinds of nontraditional families. Among these are single-parent families, adopted families, blended families, and lesbian and gay families. It is not the type of family that makes for a good loving household, they argue, but the amount of love and care that exists in one.

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A final objection to human cloning goes something as follows: Sometimes we have a gut reaction to something we regard as abhorrent, and we are offended by the very thought of it. We cannot always give reasons for this reaction, yet we instinctively feel that what we abhor is wrong. Many people react to human cloning in this way. The idea of someone making a copy of themselves or many copies of a celebrity is simply bizarre, revolting, and repugnant, and these emotional reactions tell us there is something quite wrong with it, even if we cannot explain.

Any adequate response to this argument would entail an analysis of how ethical reasoning works when it works well. Emotional reactions or moral intuitions may indeed play a role in moral reasoning. However, most philosophers would agree that adequate moral reasoning should not rely on intuition or emotion alone. Reflections about why one might rightly have such gut reactions are in order. People have been known to have negative gut reactions to things that, in fact, are no longer regarded as wrong—interracial marriage, for example. It is incumbent on those who assert that something is wrong, most philosophers believe, that they provide rational arguments and well-supported reasons to justify these beliefs and emotional reactions.

There is currently no federal law banning human cloning, although as we saw previously, several laws have been proposed to ban the practice or to prohibit federal funding for research that involves it. Under President George W. Bush, the President’s Council on Bioethics recommended a moratorium on all types of human cloning. In 2009, President Barack Obama replaced the council with the Presidential Commission for the Study of Bioethical Issues, chaired by philosopher Amy Gutmann and focused on specific policy recommendations.62 This commission has yet to issue a specific recommendation on cloning. Meanwhile state legislatures have weighed in on the issue. As of 2011, eight states ban human cloning for any purpose, while ten other states explicitly allow research in which clones are created and destroyed for therapeutic purposes.63

Some critics of state cloning laws argue that it is too difficult to ban one type of cloning without the other. For example, if reproductive cloning were prohibited but research or therapeutic cloning were allowed, it would be difficult to know for certain that cloned embryos were not being produced for reproductive purposes. With regard to proposed federal bans, some have pointed out that if there are no federal funds provided for research cloning, then there also will be no oversight. We will not know what types of cloning that corporations or other private entities engage in. Scientists also point out how essential federal research funds have been for new developments in biotechnology.

Genetic Engineering and Genetic Screening The ethical debate over the genetic engineering of human offspring overlaps substantially with the debate outlined previously about reproductive human cloning. Opponents of “designer babies” argue that exercising control over these aspects of traditional human reproduction would be both unnatural and an affront to human dignity. Those on the other side argue on consequentialist grounds for giving parents the opportunity to choose to produce the healthy children they desire, even if that involves selection of preferred physical and mental characteristics beyond the merely healthy. So long as there is no coercion involved and no one is harmed in the process, one might think that people should be free to reproduce in accord with their own interests and in ways that would be beneficial to society. Again, the worry is that this could easily slide toward a eugenic

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project in which reproduction is regulated in more insidious ways. Defenders of genetic engineering will respond by claiming that the slope is not really that slippery.

There are some obvious benefits to human genetic engineering. If it were possible to use gene therapy to activate, replace, or change malfunctioning genes before a baby is born, then this could greatly reduce human suffering from genetic diseases. Using genetic techniques to manipulate cells or organisms in order to provide human blood-clotting factor for hemophiliacs, manufactured human insulin for diabetics, human growth hormone for those who need it, and better pain relievers for everyone is surely desirable and ethically defensible. However, use of the technology also raises ethical concerns. Among these questions are those related to the risks that exist for those who undergo experimental genetic therapies and the issue of informed consent in such experiments.64

Related to the issue of informed consent are a variety of ethical questions that arise with regard to genetic screening, the process of searching for and screening out genetic defects. For example, what limits should be placed upon the ways that genetic information is used? Do people have a right to know their own genetic predispositions? And is there a right to privacy regarding genetic information?

We also should be concerned about access to these procedures and whether only the well-off will benefit from them. The biotechnology industry continues to grow. Should information and products of great medical benefit be kept secret and patented by biotech companies and developers? For example, the company Myriad Genetics found a gene linked with breast cancer and attempted to patent the gene.65 In another example, therapeutic techniques now allow the alteration of genes in sperm, which affect not the individual himself but his offspring and thus alter human lineage.66 It is one thing to do this in the interest of preventing genetic disease in one’s offspring, but it is quite another to add new genetically based capabilities for one’s children or to the human race. Such capabilities raise serious moral concerns. Are we wise enough to do more good than harm with these methods? Can we legitimately deny access to such technologies to individuals who may benefit from them, without also violating those individuals’ rights to do what they want with their own bodies and reproductive capabilities?

The Value of Privacy As in our discussion of abortion in Chapter 11, arguments about our rights to employ biotechnologies in our own bodies often involve the value of privacy. We might want to say that decisions that people make about their own health and reproductive lives is no one’s business but their own. We think that people generally have a right to privacy, but we are less sure what this means and what kinds of practices would violate privacy. Suppose, for example, that a technology existed that could read a person’s mind and the condition of various parts of her body, or could hear and see what goes on in one’s home—his bedroom or bathroom—and could record all of these in a data bank that would be accessible to a variety of interested parties. What, if anything, would be wrong with this?67 One of the things that we find problematic about others having access to this knowledge is that they would have access to matters that we would not want anyone else to know. According to Thomas Scanlon, this is what the right to privacy is—a right “to be free from certain intrusions.”68 Some things, we say, are just nobody else’s business.

If this definition of privacy seems reasonable, then we can ask for reasons why we would not want certain intrusions like those in the hypothetical example. Many reasons

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have been suggested, and you may sympathize with some more than others. Four are provided here.

The first concern is the basic idea of shame. Shame and embarrassment are feelings we have when certain private things become known or observed—one’s thoughts, bathroom behavior, or sexual fantasies, for example. Some private thoughts and behaviors are thought to be shameful—something that should remain private and not shared in public. Could there be reasons to be ashamed of our genetic inheritance or genetic disease susceptibilities, for example?

A second reason why we might want certain things kept to ourselves is our desire to control information about us and to let it be known only to those to whom we choose to reveal it. Such control is part of our ability to own our own lives. We speak of it as a form of autonomy or self-rule. In fact, the loss of control over some of these more personal aspects of our lives is a threat to our very selfhood, some say. For example, in his classic study of what he calls “total institutions,” such as prisons and mental hospitals, the sociologist Erving Goffman describes the way that depriving a person of privacy is a way of mortifying (literally killing) the self.69 Having a zone of privacy around us that we control helps us define ourselves and marks us off from others and our environment. Perhaps our genetic endowment should be kept private so that we have a zone of control in this sphere.

Third, privacy helps in the formation and continuation of personal relations. We are more intimate with friends than with strangers, and even more so with lovers and spouses than with mere acquaintances. The private things about ourselves that we confide to those closest to us are an essential part of those relationships. According to legal theorist Charles Fried, “privacy is the necessary context for relationships which we would hardly be human if we had to do without—the relationships of love, friendship, and trust.”70 Sexual intimacies are thus appropriate in the context of a loving relationship because they are private sharings that also help to establish and further that relationship. It may be that our genetic heritage is only the business of our potential sexual partners, those with whom we may choose to have children. Potential mates might actually have a right to access our genetic information, in this view.

Fourth, we want to keep certain things private because of the risk that the knowledge might be used against us to cause us harm. Screening procedures in particular come to mind here. Drug screening, HIV testing, or genetic disease scans all make information available to others that could result in social detriment. For example, we could be harmed in our employment or our ability to obtain medical insurance. The problem of data banks is also at issue here. Our medical records, records of psychiatric sessions, histories of employment, and so forth could be used legitimately by certain people. However, they also may be misused by those who have no business having access to them. In a particularly problematic example, the managed care company that was paying for the psychological counseling of one patient asked to inspect his confidential files. The psychologist was concerned. “The audit occurred, they rifled through my files,” he said, and “made copies and went. But it changed things. He [the patient] became more concerned about what he was saying…. A few visits later he stopped coming.”71 Another notorious case is also illustrative of the harm that can be caused by the invasion of privacy. During a contentious New York congressional campaign, someone obtained a copy of the hospital records of one of the candidates and sent them anonymously to the press. The New York Post

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published the material, including notes about the candidate’s attempt to kill herself with sleeping pills and vodka. Despite this, the candidate won the election and she successfully sued the hospital for invasion of privacy.72 Similar concerns about privacy and reputation may arise with regard to genetic information.

Screening and Conflicting Interests As we have seen, the value of privacy is particularly relevant in the context of genetic screening and screening procedures in general. Ethical debates over screening often revolve around a conflict between the privacy interests of those being screened, on the one hand, and the legitimate interests of others in obtaining relevant information, on the other. An employer may have a legitimate interest in having a drug-free workplace, for example. It may have a valid economic interest, for employees may not be able to do an effective job if they have drug-use problems. Public transportation passengers may also have a legitimate interest in whether or not those who build and operate the bus, train, or plane function well and safely. Airline passengers may have an interest in having other passengers and their bags scanned to prevent dangerous materials from being carried on board. Drug screening in professional athletics might be justified with reference to the interests of several different parties. In some cases, it may be in the legitimate economic interests of the owners; in collegiate athletics and nonprofessional competitions such as the Olympics it might be justified by the fans’ interests in fair competition as well as by an interest in the health of the athletes themselves. But in all of these cases, we also need to consider the privacy interests of the parties being screened.

In cases of conflicting interests generally, as in the more specific examples given here, we want to know on which side the interest is stronger. In the case of drug testing of airline pilots, the safety of the passengers seems clearly to outweigh the legitimate interest that pilots might have in retaining their privacy. In many other cases of employee drug screening, it is not so clear that employers’ economic interests outweigh the employees’ privacy interest