Human Genetics

Genetic Enhancement Should Only Be Limited by Regulations for Safety and Efficacy

Human Genetics , 2010 Ronald Bailey is a science correspondent for Reason magazine and Reason.com, where he writes a weekly science and technology column. He is the author of Liberation Biology: The Scientific and Moral Case for the Biotech Revolution.

What is transhumanism? A pretty good definition is offered by bioethicist and transhumanist James Hughes who states that transhumanism is "the idea that humans can use reason to transcend the limitation of the human condition." Specifically, transhumanists welcome the development of intimate technologies that will enable people to boost their life spans, enhance their intellectual capacities, augment their athletic abilities, and choose their preferred emotional states. What's particularly noteworthy is that Hughes argues that democratic decision making is central to the task of guiding humanity into the transhuman future....

Restrictions on Reproductive Technologies

The urge for democratically imposed restrictions on the use of reproductive technologies has not abated. Recall that the federal government imposed a moratorium in the 1970s on funding any research on in vitro fertilization [IVF] techniques. In January 1980, Sen. Orrin Hatch (R-Utah), alarmed by the opening of the first IVF clinic in the United States, sent a letter to Sen. Ted Kennedy (D-Mass.), who was then chairman of a health and scientific research subcommittee, urging him to convene hearings on the grounds that "prudence and our commitment to public participation in decision making suggest that the test tube baby laboratory not become fully operational until we have had the opportunity to consider the matter in open congressional hearings." Nine states including New York currently prohibit gestational surrogacy.

In 1993, President Bill Clinton rejected the recommendations from the NIH's [National Institutes of Health's] Human Embryo Research Panel and prohibited federal funding of the creation of human embryos solely for research purposes. This ban did not apply to research on spare embryos or privately funded research. In addition, in the wake of the announcement that Scottish researchers had cloned a sheep in 1997, President Clinton announced an immediate moratorium on any human cloning research. In 1998, Clinton urged Congress to ban human cloning experiments for at least five years. Today [2009] 13 states ban reproductive human cloning, and six outlaw therapeutic cloning. The House of Representatives twice passed a bill that would have criminalized somatic cell nuclear transfer research and which would have criminalized any American who went abroad to take advantage of therapies developed using that technique—the penalty would have been 10 years in prison and $1 million in fines....

Democratically imposed restrictions on using advanced biotechnological techniques are not confined to the United States. For example, Britain established the Human Fertilisation and Embryology Authority (HFEA) in 1991 to regulate the use of embryos and gametes in infertility treatment and research. The HFEA has told couples that they could not select the sex of embryos to be implanted.

Even now, parents wanting to use PGD [preimplantation genetic diagnosis] to ensure that their children will not be burdened with an inherited genetic disease must apply for permission from the HFEA. And the HFEA has banned paying women for providing eggs to be used in research. Crucially, the HFEA can regulate not just on the grounds of ensuring quality, safety, and efficacy, but also on ethical grounds.

An Example of Government Interference

Consider the case of the Whitaker family from Sheffield, England, to see just how perilous it is to allow a government agency to interfere in a family's reproductive decisions. In 2002, Michelle and Jayson Whitaker asked the HFEA for permission to use in vitro fertilization and PGD to produce a tissue-matched sibling for their son Charlie, who suffers from a rare anemia. That disease caused him to need a blood transfusion every three weeks. The HFEA refused, calling the procedure "unlawful and unethical," ruling that tissue matching is not a sufficient reason to attempt embryo selection. Desperate, the Whitakers came to the United States, where PGD is still legal. In June 2003, Michelle Whitaker gave birth to James, whose umbilical cord stem cells are immunologically compatible with Charlie's. The stem cells were transplanted and, six years later, both boys are reported to be healthy. Please keep in mind that taking stem cells from James's umbilicus in no way endangered or harmed him.

Again, in this case, the HFEA's refusal was not based on safety or efficacy, but on the moral opinions of the authority's governing panel. Such a regulatory authority necessarily turns differences over morality into win/lose propositions, with minority views—and rights—overridden by the majority.

It is hard to see what is ethically wrong with parents taking advantage of such testing, since it is aimed at conferring general benefits that any child would want to have.

Fortunately, Americans are allowed to use PGD to select "savior siblings" like James Whitaker and also to enable their progeny to avoid the risks of genetic diseases. For example, consider the 2002 case of a married 30-year-old geneticist who will almost certainly lose her mind to early-onset Alzheimer's disease by age 40 and who chose to have her embryos tested in vitro for the disease gene. She then implanted only embryos without the gene into her womb. The result was the birth of a healthy baby girl—one who will not suffer Alzheimer's in her 40s. The mother in this case certainly knows what would face any child of hers born with the disease gene. Her father, a sister, and a brother have all already succumbed to early Alzheimer's.

Social Consequences

Bioethicist Jeffrey Kahn objected to using PGD in this case arguing, "It's a social decision. This really speaks to the need for a larger policy discussion, and regulation or some kind of oversight of assisted reproduction." Kahn is right that parents will someday use PGD to screen embryos for desirable traits such as tougher immune systems, stronger bodies, and smarter brains. It is hard to see what is ethically wrong with parents taking advantage of such testing, since it is aimed at conferring general benefits that any child would want to have....

Kahn is wrong when he claims that the decision to use PGD by prospective parents is a "social decision" requiring more regulation. First of all, in the capacious sense implied by Kahn, any parent's decision to have a child, even by conventional means, has "social consequences" for us all. So would Kahn have neighbors, regulators, and bioethicists weigh in on everybody's reproductive decisions? Kahn would doubtless counter that, unlike conventional reproduction, assisted reproduction involves the use of scarce medical resources that could be used for other purposes (which they prefer).

Not one of you gave your consent to be born, much less to be born with the specific complement of genes that you bear.

Again, Kahn's notion of "social" could apply to anything—what if Kahn disapproved of someone buying nonunion clothing or vacationing in the Caribbean rather than devoting his resources to building public parks or highways? In this case, the parents using assisted reproduction and PGD are spending their own money for the benefit of their own children to work with doctors who are freely devoting their skills.

The Consent of Children-To-Be

Another often-heard objection is that genetic engineering will be imposed on "children-to-be" without their consent. First, I need to remind everyone reading this article that not one of you gave your consent to be born, much less to be born with the specific complement of genes that you bear. Thus, the children born by means of assisted reproductive therapies and those produced more conventionally stand in exactly the same ethical relationship to their parents. [German philosopher Jürgen] Habermas disagrees, claiming, "Eugenic interventions aiming at enhancement reduce ethical freedom insofar as they tie down the person concerned to rejected, but irreversible intentions of third parties, barring him from the spontaneous self-perception of being the undivided author of his own life." However, [philosophy professor] Allen Buchanan correctly points out that Habermas does not actually make clear why a person who develops from a genetically enhanced embryo should feel that they are not the "author" of her life or be regarded as being somehow less free by others. Habermas "is assuming that how one's genome was selected is relevant to one's moral status as a person. This error is no less fundamental than thinking that a person's pedigree—for example, whether she is of noble blood or 'base-born'—determines her moral status," explains Buchanan.

Another frequently heard assertion from opponents of enhancement technologies is that a genetically engineered child somehow feels less loved and appreciated than one who was born in the conventional way. Similar fears were expressed by many bioethicists when in vitro fertilization began to be used in the 1970s and 1980s. The good news is that recent research finds that IVF children and their parents are as well-adjusted as those born in the conventional way. And this should be the case for enhanced children as well. As Frances Kamm [professor of philosophy and public policy] argues, "Not accepting whatever characteristics nature will bring but altering them ex- ante does not show lack of love.... This is because no conscious being yet exists who has to work hard to achieve new traits or suffer fears of rejection at the idea they should be changed. Importantly, it is rational and acceptable to seek good characteristics in a new person, even though we know when the child comes to be and we love him or her, many of these characteristics may come and go and we will continue to love the particular person."

The absurdity of a requirement for prenatal consent becomes transparent when you ask proponents of such a requirement if they would forbid fetal surgery to correct spina bifida or fetal heart defects. After all, those fetuses can't give their consent to those procedures, yet it is certainly the moral thing to do. For that matter, taking this strong position on consent to its logically extreme conclusion would mean that children couldn't be treated with drugs, or receive vaccinations. So using future biotechnical means to correct genetic diseases like cystic fibrosis or sickle-cell anemia at the embryonic stage will similarly be morally laudatory activity. Surely one can assume that the beneficiary—the not-yet-born, possibly even the not-yet-conceived child—would happily have chosen to have those diseases corrected.

Consent for Enhancement

But what about enhancements, not just therapeutic biotechnical interventions? Let's say a parent could choose genes that would guarantee her child a 20 point IQ boost. It is reasonable to presume that the child would be happy to consent to this enhancement of her capacities. How about plugging in genes that would boost her immune system and guarantee that she would never get colon cancer, Alzheimer's, AIDS, or the common cold? Again, it seems reasonable to assume consent. These enhancements are general capacities that any human being would reasonably want to have. In fact, lots of children already do have these capacities naturally, so it's hard to see that there is any moral justification for outlawing access to them for others.

Fritz Allhoff [assistant professor of philosophy] has grappled nicely with the issue of consent. Allhoff offers a

principle derived from the second formulation of [German philosopher Immanuel] Kant's categorical imperative that we treat individuals as ends and never merely as means or, more simply, to treat them in ways to which they would rationally consent. Allhoff turns next to philosopher John Rawls's notion of primary goods. In A Theory of Justice, Rawls defines primary goods as those goods that every rational person should value, regardless of his conception of the good. These goods include rights, liberties, opportunities, health, intelligence, and imagination. As Allhoff argues, "These are the things that, ex hypothesi, everyone should want; it would be irrational to turn them down when offered. Nobody could be better off with less health or with fewer talents, for example, regardless of her life goals.... Since primary goods are those that, by definition, any rational agent would want regardless of his conception of the good, all rational agents would consent to augmentation of their primary goods."

Allhoff then contends that such enhancements would be permissible if every future generation would consent to them. But the requirement that all future generations must consent adds nothing to the moral force of Allhoff's arguments since already all rational agents would consent to such enhancements. So again, safe genetic interventions that improve a prospective child's health, cognition, and so forth would be morally permissible because we can presume consent from the individuals who benefit from the enhancements.

With accumulation of genetic understanding, human freedom will then properly be seen as acting to overcome these predispositions.

Genes and Freedom

Many opponents of human genetic engineering are either conscious or unconscious genetic determinists. They fear that biotechnological knowledge and practice will somehow undermine human freedom. In a sense, these genetic determinists believe that somehow human freedom resides in the gaps of our knowledge of our genetic makeup. If parents are allowed to choose their children's genes, then they will have damaged their children's autonomy and freedom. According to environmentalist Bill McKibben, "The person left without any choice at all [emphasis his] is the one you've engineered. You've decided, for once and for all, certain things about him: He'll have genes expressing proteins that send extra dopamine to alter his mood; he'll have genes expressing proteins to boost his memory; to shape his stature." People like McKibben apparently believe that our freedom and autonomy somehow depend on the unknown and random combinations of genes that a person inherits. But even if they were right—and they are not—genetic ignorance of this type will not last.

Advances in human whole genome testing will likely become available by 2014 so that every person's entire complement of genes can be scanned and known at his or her physician's office for as little as $1,000. Once whole genome testing is perfected we will all learn what even our randomly conferred genes may predispose us to do and from what future ills we are likely to suffer. Already, my relatively inexpensive genotype scan from 23andMe tells me that I have alleles that give me a somewhat greater risk of developing celiac disease, a lower risk of rheumatoid arthritis, as well as having a higher sensitivity to warfarin, among other traits. With accumulation of genetic understanding, human freedom will then properly be seen as acting to overcome these predispositions, much like a former alcoholic can overcome his thirst for booze. Fortunately, biotech will help here as well as with the development of neuropharmaceuticals to enhance our cognitive abilities and change our moods....

Respecting Our Pluralistic Society

People should not be forced to use medicines and technologies that they find morally objectionable. Take the case of the Amish. Amish individuals live in an open society—ours—and can opt out of our society or theirs whenever they want. As followers of a reasonable comprehensive doctrine, they have a system for voluntarily deciding among themselves what new technologies they will embrace. The situation of the Amish demonstrates that technological choices don't have to involve everyone in a given society. (Although Amish practicality has caused

them to embrace modern medicine when it comes to treating genetic maladies that plague their community.)

Eventually, one can imagine that in the future different treatment and enhancement regimens will be available to accommodate the different values and beliefs held by citizens. Christian scientists would perhaps reject most of modern biotechnology outright; Jehovah's Witnesses might remain leery of treatments that they interpret to being akin to using blood products or blood transfusions; Roman Catholics might refuse to use regenerative treatments derived from human embryonic stem cells; and still others will wish to take the fullest advantage of all biomedical enhancements and treatments. In this way, a pluralistic society respects the reasonable comprehensive doctrines of their fellow citizens and enables social peace among moral strangers.

To the extent that new biotechnologies need regulation, agencies should be limited to deciding, as they have traditionally done, only questions about safety and efficacy.

[Bioethicist] Julian Savulescu is right when he reminds us, "The Nazis sought to interfere directly in people's reproductive decisions (by forcing them to be sterilized) to promote social ideals, particularly around racial superiority. Not offering selection for non-disease genes would indirectly interfere (by denying choice) to promote social ideals such as equality or 'population welfare.' There is no relevant difference between direct and indirect eugenics. The lesson we learned from eugenics is that society should be loath to interfere (directly and indirectly) in reproductive decision making."

The Role of Regulation

To the extent that new biotechnologies need regulation, agencies should be limited to deciding, as they have traditionally done, only questions about safety and efficacy. Regulatory agencies also have an important role in protecting research subjects and patients from force and fraud by imposing informed consent requirements on researchers. But when people of good will deeply disagree on moral issues that don't involve the prevention of force or fraud, it is a fraught exercise to submit their disagreement to a panel of political appointees or a democratic vote. That way leads to intolerance, repression, and social conflict.

The genius of a liberal society is that its citizens have wide scope to pursue their own visions of the good, including transhumanism, without excessive hindrance by their fellow citizens.

Further Readings Books

Carol Isaacson Barash Just Genes: The Ethics of Genetic Technologies. Westport, CT: Praeger, 2008.

Roberta M. Berry The Ethics of Genetic Engineering. New York: Routledge, 2007.

Celia Deane-Drummond Genetics and Christian Ethics. New York: Cambridge University Press, 2006.

Joel Garreau Radical Evolution: The Promise and Peril of Enhancing Our Minds, Our Bodies—And What It Means to Be Human. New York: Doubleday, 2005.

Jonathan Glover Choosing Children: Genes, Disability, and Design. New York: Oxford University Press, 2006. H. Daniel Monsour, ed. Ethics and the New Genetics: An Integrated Approach. Toronto: University of Toronto

Press, 2007.

Ramez Naam More than Human: Embracing the Promise of Biological Enhancement. New York: Broadway Books, 2005.

Erik Parens, Audrey R. Chapman, and Nancy Press, eds. Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation. Baltimore, MD: Johns Hopkins University Press, 2006.

Michael J. Sandel The Case Against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: Belknap Press, 2007.

Julian Savulescu and Nick Bostrom, eds. Human Enhancement. New York: Oxford University Press, 2009. Pete Shanks Human Genetic Engineering: A Guide for Activists, Skeptics, and the Very Perplexed. New York:

Nation Books, 2005.

Thomas A. Shannon, ed. Genetics: Science, Ethics, and Public Policy: A Reader. Lanham, MD: Rowman & Littlefield, 2005.

Neil F. Sharpe and Ronald F. Carter Genetic Testing: Care, Consent, and Liability. Hoboken, NJ: Wiley-Liss, 2006.

Claudio M. Tamburrini and Torbjörn Tännsjö Genetic Technology and Sport: Ethical Questions. New York: Routledge, 2005.

Ronnee K. Yashon and Michael R. Cummings Human Genetics and Society. Belmont, CA: Brooks/Cole, 2009. Simon Young Designer Evolution: A Transhumanist Manifesto. Amherst, NY: Prometheus Books, 2006.

Periodicals

Bryan Appleyard "Design Fault," Spectator, March 4, 2006. Rebecca Atkinson "I Wouldn't Have Minded If My Baby Had Been Born Deaf, but the Embryology Bill Insists I

Should," Guardian, October 10, 2008. Ronald Bailey "Human Rights and Human Enhancement: Is Genetic Modification of People Moral?" Reason

Online, May 29, 2006. www.reason.com. Susannah Baruch and Kathy L. Hudson "Civilian and Military Genetics: Nondiscrimination Policy in a Post-

GINA World," American Journal of Human Genetics, October 2008.

Marcy Darnovsky "Red Flags over Consumer Genetics," San Diego Union Tribune, May 22, 2008.

Economist "Owning the Body and the Soul," March 12, 2005.

Masha Gessen "Jewish Guinea Pigs: What if a Gene Patent Is Bad for the Jews," Slate, July 26, 2005. www.slate.com.

Denise Grady "Girl or Boy? As Fertility Technology Advances, so Does an Ethical Debate," New York Times, February 6, 2007.

Henry Greely "The Genetics of Fear," Democracy: A Journal of Ideas, Spring 2008. www.democracyjournal.org.

Amy Harmon "Prenatal Test Puts Down Syndrome in Hard Focus," New York Times, May 9, 2007. Kathy L. Hudson, M.K. Holohan, and Francis S. Collins "Keeping Pace with the Times—The Genetic

Information Nondiscrimination Act of 2008," New England Journal of Medicine, June 19, 2008. Andrew J. Imparato and Anne C. Sommers "ADA and the New Eugenics," Washington Examiner, August 10,

2005. Claudia Kalb "Peering into the Future," Newsweek, December 11, 2006.

Sara Katsanis and Gail H. Javitt "Surreptitious DNA Testing," Genetics & Public Policy Center, January 2009.

www.dnapolicy.org.

David King "The Human Fertilisation and Embryology Bill 2008," Center for Genetics and Society, April 15, 2009. www.geneticsandsociety.org.

William Saletan "Leave This Child Behind: Sports, Segregation, and Environmental Eugenics," Slate, December 1, 2008. www.slate.com.

Darshak M. Sanghavi "Wanting Babies Like Themselves, Some Parents Choose Genetic Defects," New York Times, December 5, 2006.

Scientific American "The Need to Regulate 'Designer Babies,'" May 2009. Wesley J. Smith "Politically Correct Eugenics: Brownback and Kennedy Do the Right Thing," Weekly Standard,

March 31, 2008.

Rob Stein "New Safety, New Concerns in Tests for Down Syndrome," Washington Post, February 24, 2009.

Beth Whitehouse "Experts Fear Potential Abuses of Genetic Screening," Newsday, July 18, 2008.

George F. Will "Will: The Attack on Kids with Down Syndrome," Newsweek, January 29, 2007.

Cathy Young "A Guide for the Modern Prometheus: Is There a Right Way to Transcend Biology?" Reason Online, July 11, 2006. www.reason.com.

Andi Zeisler and Emily Galpern "Conceiving the Future: Reproductive-Justice Activists on Technology and Policy," Bitch, June 6, 2008.

Full Text: COPYRIGHT 2010 Greenhaven Press, a part of Gale, Cengage Learning.

Source Citation

Bailey, Ronald. "Genetic Enhancement Should Only Be Limited by Regulations for Safety and Efficacy." Human Genetics. Ed. Noël Merino. Detroit: Greenhaven Press, 2010. Current Controversies. Rpt. from "Transhumanism and the Limits of Democracy: A Paper Presented at the Workshop on Transhumanism and Democracy." Reason (28 Apr. 2009). Gale Opposing Viewpoints In Context. Web. 30 Oct. 2012.

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