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Unit #10 - Geneticization

10.1 Introduction to Unit #10

This unit is structured as a directed readings exercise. It is assumed you have been keeping up to

date with your readings for the course and have completed reading the last six chapters of Kerr

and Shakespeare (2002). The material presented in the unit notes provided below highlights

some of the important points made by Kerr and Shakespeare in their final six chapters. It also

attempts to update students regarding advancements in genetic science and the regulations that

control its application since 2002 when Kerr and Shakespeare’s book was published. An effort is

also made to provide additional examples of the issues presented in the six chapters from media

articles and radio documentaries. This unit presents the largest reading requirement of any unit in

the course, and the course schedule has been adjusted accordingly, allowing twice the regular

time allotted for completion.

In addition to the six chapters from Kerr and Shakespeare you are required to read three articles

which appeared in the Science section of The Economist, and to listen to two CBC Quirks and

Quarks segments: “CRISPR – the Genetic engineering Revolution” and “The Sports Gene.” The

unit describes some of the ideas and concepts presented in the readings and poses some questions

which may help you understand and apply those ideas.

10.2 The rise of the new genetics (Kerr and Shakespeare Chapter 6)

Kerr and Shakespeare’s Chapter 6, “The rise of the new genetics,” outlines the amazing

developments in genetic science and human embryology which have occurred from the 1970s up

to 2002, when their book was published. Their book became available just one year ahead of the

completion of the Human Genome Project (HGP 1984-2003). You might notice that when Kerr

and Shakespeare were writing, scientists were estimating that humans probably had 30,000

protein coding genes. This was a much lower estimate than the 100,000 genes many scientists

were anticipating when the HGP was launched. We now know that there are approximately

20,500 human genes. It turns out, humans have around the same number of coding genes as

mice.

Another somewhat astonishing discovery of the HGP is that as much or more than 90% of the

DNA in human chromosomes does not contain protein building code. Initially, when people were

unsure of what the function of this huge amount of non-coding DNA was, it was referred to as

“junk DNA". In the past decade, progress has been made in identifying the functions performed

by some of that non-coding DNA. For example, it appears some of our non-coding DNA helps

operate the systems which turn coding genes off and on. After all, during the development of a

human baby there need to be mechanisms which start the growth of a particular body part or

organ and then turn off or slow down the growth when the correct status is achieved. For

example, there is probably an optimal size for our top two incisor teeth. At some point the

genetic coding that tells our incisors to grow needs to be turned down or shut off. Otherwise we

might wind up like beavers with two front teeth that grow at a relative rapid rate throughout our

lives. The DNA that does not code for protein but none the less appears to have important

functions is said to have an epigentic effect. The prefix "epi" means "in addition to." In other

words epigenetics describes the roles of DNA in addition to protein coding.

Once scientists had the human genome mapped, progress was made on mapping the genomes of

other plant and animal species. The new area of science associated with the decoding of DNA

and making use of that information was given its own title, genomics. As is the case with many

new technologies, what was initially very time consuming and expensive has become much

faster and cheaper. Whereas the HGP took over a decade to fully decode the DNA of a single

human, today a DNA sample can be decoded in hours.

Not surprisingly, a new branch of genetic science referred to as epigenetics has also emerged

during the post-HGP period which attempts to explain the purpose and operation of noncoding

DNA and other factors outside of the coding genome which can influence an organism’s

development. While exploring epigenetics in any detail is beyond the purview of this course,

students who are interested in exploring the topic will discover some amazing inheritance related

phenomena that cannot be accounted for by our protein coding genes alone.

Gene hunts

Kerr and Shakespeare (2002) show us that even prior to the complete mapping of the human

genome, genetic science had achieved many important breakthroughs such the ability to

associate a number of human illnesses with particular segments of DNA referred to as

“markers.” The ability to identify markers for certain conditions enabled researchers to conduct

what Kerr and Shakespeare call “gene hunts.” Over the course of the 1980s and 1990s

researchers had identified markers for several serious genetically-linked human ailments. Some

of the conditions for which genetic markers had been identified prior to 2002 are listed in Table

10.1 provided below:

Table 10.1 Conditions for which genetic markers had been identified prior to 2002

Condition

Year of Marker Discovery

Huntington’s disease

1983

Duchenne muscular dystrophy

1983

Polycystic kidney disease

1985

Retinoblastoma

1985

Cystic fibrosis

1985

Source: Kerr and Shakespeare (2002: 85)

Once the HGP had finished mapping the entire code for protein coding genes in humans, the

capacity to identify the genes associated with (or correlated with) particular human illnesses

exploded. Genes associated with thousands of human illnesses and other physical traits have

been identified, although many of the links identified involve correlations that range from 100%

to far weaker values..

Other seemingly miraculous developments

Students might recall that in Unit #1 of this course we discussed the genetic technologies which

enabled scientists to create transgenic species or genetically modified organisms (GMOs).

Examples presented included tomatoes with fish genes and Roundup Ready Canola. A number of

such organisms had been developed through genetic modification prior to the mapping of the

human genome. However, as decoding of DNA from more species continues apace, this sort of

activity becomes easier.

Public issues and controversy

In Chapter 6, Kerr and Shakespeare introduce us to some of the controversial issues associated

with recent advances in genetic technology. They show how the issue of whether the human

genetic code could be patented by a for-profit corporation generated arguments among

participants in the HGP. They discuss issues such as whether human cloning should be allowed;

whether researchers should be allowed to explore the links between our genetic code and our

psychological and behavioural traits.

CRISPR

The most significant development in genomics since the culmination of the HGP in 2003 has

been the invention of the technology referred to as clustered regularly interspaced short

palindromic repeats (CRISPR -- pronounced crisper). CRISPR technology has taken our

capacity to edit the DNA of organisms to a whole new level. It allows us to splice DNA, remove

sections of code and replace them with different sections of code.

10.3 Genetics and culture (Kerr and Shakespeare Chapter 7)

Scientists, the media and members of the public, became quite excited in the 1990s about the

prospects of unlocking the secrets of the human genetic code. Kerr and Shakespeare describe

media stories which referred to the decoded genome as: “the code of codes,” “the book of life,”

“the Holy Grail of genetic science.”

As is the case with many discoveries hyped by mass media, the truth about the genome was

somewhat less than what was initially promised. Notwithstanding, the incredible importance of

the HGP to genetic science, the “great discovery,” left us with many unanswered questions and

new problems to solve. What about the huge amount of of our DNA that is non-protein-coding –

what is it for? Why is it that humans have about the same number of genes as mice? How is it

possible that our species with its large, complex brain and incredible thinking capacity has barely

more coding genes than a mouse?

In Chapter 10, “Genes as culture,” Kerr and Shakespeare present a warning about the adverse

outcomes that can arise when we endow genetic science with seemingly super powers and read

more into the science than is really there. They are highly critical of the treatment of the gene as

a cultural icon in the media and the tendency for journalists to blow out of proportion benign or

weak correlations between human behavioural traits and particular genotypes. They describe the

process whereby people come to associate a particular genotype with “desirable” and

“undesirable” human characteristics as geneticization.

Kerr and Shakespeare underline the dangers involved in reading too much into weak or uncertain

links between genes and human behaviour traits and qualities such as intelligence. As we have

previously learned, correlations do not always demonstrate causal relationships. Similarly, poorly

informed journalists and sloppy scientists can do a poor job of communicating the meaning and

importance of statistical information related to correlations such as the heritability statistic.

Journalists eager to generate sensational headlines can produce stories which exaggerate links

between various human behaviours and genotypes. As we have discussed earlier in this course,

many traits are the result of a MAGOTS (many associated genes of tiny significance) condition

in which multiple genes are involved in shaping in a trait.

Furthermore, Kerr and Shakespeare warn that if people attach more importance to

gene-behaviour correlations than is warranted, we could find ourselves on the slippery slope

toward a new modern era of social Darwinism and what they refer to as backdoor eugenics. An

additional concern is the role of private corporations in the promotion of genetic science. If there

is a gene identified with a particular adverse human condition -- perhaps a disease or

psychological condition such as anxiety, corporations can profit from selling customers the

required genetic test or the right drugs to combat the condition. In other words there are

incentives for companies to join in the hyping of gene-behaviour links.

Kerr and Shakespeare provide stinging criticism for the explosion of frequently suspicious

gene-for claims announced in the media since the human genome was mapped. It seems if there

is any human quality, whether desirable or undesirable, the media will be announcing the

discovery of the gene-for it.

"DNA has assumed near spiritual importance as a powerful and sacred object through which

human life and fate can be explained and understood. When the media reported the search for

genes for alcoholism, novelty seeking, obesity or homosexuality, they are fueling the idea that

genes determine not only large areas of disease, but also a range of behaviours. There are selfish

genes, violence genes, celebrity genes, couch potato genes, depression genes, genes for genius,

genes for saving and even genes for sinning. These popular images convey a striking picture of

the gene as powerful, deterministic, and central to an understanding of both everyday behaviour

and the ‘secret of life.’" (Kerr and Shakespeare 2002: 102).

Links to three articles from the Science section of The Economist magazine which discuss

gene-for claims related to political behaviour, violence and business acumen are provided below.

The science section of the Economist is a highly regarded source for information on scientific

developments written so that non-scientists can understand and appreciate it. While The

Economist’s science editors are not in the same league as tabloid journalists who live to

sensationalize, the articles do present us with the sort of gene-for claims which Kerr and

Shakespeare warn us about. That being said, you will find qualifying statements in these articles

which remind us not to read too much into some of the research findings being described.

10.4 Choice and its consequences (Kerr and Shakespeare, Chapters 8 and 9)

In Chapters 8 and 9, Kerr and Shakespeare discuss the potential impacts of genomics on human

reproductive choices. The results of the HGP and earlier research going back to the 1970s have

greatly increased the amount of information available to prospective parents. We can now

determine whether a person carries genes associated with some serious medical conditions and

our capacity to identify more such genes is expanding at a rapid pace. That information can

influence a woman's or a couple’s decision to have children. Furthermore, the capacity to read

the genetic code of a developing fetus, associated with a procedure such as amniocentesis, can

influence a woman’s decision about whether to proceed with a pregnancy or have an abortion.

Kerr and Shakespeare are supportive of a woman’s right to determine whether or not to terminate

a pregnancy. They also contend that termination on the basis of genetic testing which identifies

serious conditions such as Tay-Sachs disease or Duchenne muscular dystrophy is a reasonable

choice for a woman to make. They are less sympathetic toward reproductive decisions based on

the identification of less serious gene-linked conditions associated with minor disabilities, the

sex of the fetus, or behavioural and psychological traits. Furthermore, as we have already

observed, the purported links between particular genotypes and behaviour traits is often far from

conclusive. Should a pregnancy be terminated because there is a likelihood that the baby will

inherit the short version of the 5-HTT gene associated with depression? Having that version of

the gene does not mean that one’s child will become depressed, only that there is an increased

likelihood that the child could suffer from clinical depression and usually only if the child is

exposed to severe trauma.

Selecting for sex

Media stories from just a few years ago indicated that in some Canadian cities there are private

for-profit clinics which will perform ultrasound tests on women in the early stages of pregnancy

and tell the prospective mothers the sex of the unborn baby. Under the rules of Canada’s federal

and provincial medical associations, it is only during the later stages of pregnancy that a licensed

doctor can divulge the sex of the fetus. Decisions about whether to terminate a pregnancy

become more ethically and medically complicated during the later stages of pregnancy, making a

decision to terminate on the basis of the sex of the baby far less likely.

However, in Canada there are private ultrasound clinics operating that are not staffed by doctors.

The Canadian and provincial medical associations have no ability to discipline the operators of

these clinics for performing early stage ultrasounds and then telling parents about the sex of the

fetus. And, there are currently no laws in Canada which specifically outlaw the practice (there

are in the US). As a result, there are communities in Canada in which the ratio of girl babies born

to male babies born is out of whack. The normal ratio is just slightly more than 50 girl babies to

just slightly less than 50 boy babies – or right around 50:50. The data shows that in some

communities the relationship is more like 47% girl babies and 53% male babies.

It has been noted that in those communities where the ratio is not 50:50 two conditions appear to

apply – there are for-profit ultrasound clinics located in the community and there is a high

proportion of residents who are from ethnic groups which apparently have a higher preference

for male offspring. While Kerr and Shakespeare support a woman’s right to choose, they are

disturbed that the choice could be made on the basis of something like the sex of the fetus.

The sometimes feeble links between human behavioural traits and measures such as IQ with

particular genetic codes threaten to increase the challenges related to reproductive choices.

CRISPR technology now offers the prospect of editing human germ cells (sperm and eggs) and

embryos. What about choosing not to have a baby because it carries a gene associated with

homosexuality? CRISPR could be employed to remove and replace the suspected “gay gene.”

Indeed, CRISPR could provide us with the ability to alter or design the genetic codes of our

offspring to deal with most any trait. Should we be creating designer babies that do not carry

genes for aggression, low intellect, male pattern baldness, depression and so on? Should we

engage in the genetic design of babies to provide them with what is considered to be a

fashionable appearance?

We are familiar with the fact that the names given to babies in Canada tend to follow fads and

trends. Some decades saw the births of lots of Jasons and Jessicas. A decade later Sarahs and

Jonathans might all be the rage. Can we expect prospective parents to be interested in designing

offspring that are tall and thin, short or fat, blond haired, light skinned or dark skinned depending

on the fashion of the day? I shudder to think, only somewhat tongue in cheek, what sorts of

genetic design decisions some of today’s parents might make about optimal female breast size

and male penis length.

You might recall the incorrect estimates and disappointments associated with the HGP. It turned

out that the human genome was much smaller than expected and there was a whole lot of DNA

(the supposed junk) that we still knew very little about after the HGP was completed. Is it

conceivable that we might edit human DNA to eliminate what we think is the gene for a trait

such as male pattern baldness only to discover that elimination of that particular gene produced

unanticipated problems? What if the genes associated with baldness were also related to male

reproductive success? What if we discovered we were producing males with a wonderful thick

head of hair who turned out to be incapable of reproduction? Admittedly, this scenario is based

on nothing more than unfounded speculation. That being said, it does illustrate some of the

things we may want to think carefully about before we do too much tinkering with our genetic

code. Remember what happened when we strove to increase milk production and produced cows

with unhealthy udders or pug faced dogs that have trouble breathing.

At present there is legislation in place in most developed countries that prevents the sort of

human gene editing discussed in the hypothetical baldness gene scenario provided above.

However, in 2015 a first step toward editing the genetic codes of human embryos was legalized

in the UK. The new law permits the modification of the mitochondrial DNA of an embryo to

prevent a rare but serious medical condition. The decision was presented by the government of

the UK as an acceptable exception because mitochondrial DNA is involved in cell metabolism

and is not located in the cell nucleus where our coding DNA is located. Kerr and Shakespeare

would probably contend that allowing this sort of genetic engineering places us on a slippery

slope. As genetic technology makes more choices possible, people will demand the right to make

choices about a wide range of genetic traits available to their prospective children. This, they

claim, is the path toward backdoor eugenics. Rather than the state making determinations about

reproductive outcomes through egregious practices such as eugenic sterilization, parents seeking

optimal offspring will engage voluntarily in eugenics with respect to their own reproductive

choices.

Prejudice against disability

Kerr and Shakespeare warn about the potential adverse impacts that backdoor eugenics could

have for people with disabilities. They contend that once we have the capacity to prevent the

birth of a baby with a genotype related to a particular disability, prejudice against people who

continue to be born with that disability could increase. Instead of focusing on the things society

can do to help disabled people become well-functioning members of society, people might resent

the fact that the parents of the disabled person had the gall to encumber society with a

sub-optimal child when genomic science offered them the ability to prevent such a birth.

In Chapter 9, Kerr and Shakespeare contend that there are currently people who are widely

misinformed about the lives and abilities of the disabled. Even minor impairments are deemed by

some to be a tragedy, preventing disabled people from enjoying a rewarding quality of life. Kerr

and Shakespeare argue that this sort of thinking is based on misinformation and/or a poor

understanding of disability.

"For many disabled people, impairment is a fact of life, not a medical tragedy. They have a good

quality of life and achieve the same goals as non-disabled people. Many disabled people argue

that the main problems they face are caused by society, not their impairments. The solution to

disability is removing social barriers and prejudice, not removing disabled people from society."

(Kerr and Shakespeare 2002: 126)

In a future in which prejudice combined with new technologies such as CRISPR becoming

legally available to prospective parents, the occurrence of certain genetically linked disabilities

could decrease. However, some parents may not choose to intervene to prevent the birth of a

child that could inherit a disability. Indeed, if the technology is made available only to those who

can pay for it, some parents may not be able to afford the technology. Regardless of the

availability of the technology, some babies will continue to be born with congenital (a condition

one is born with but that is not necessarily related to genetics) disabilities. And, people will

continue to become disabled through illness and injury. Kerr and Shakespeare contend that our

capacity to design babies and engage in backdoor eugenics will increase prejudice against these

people and make their lives more difficult.

Consumer culture, media hype and corporate greed

Kerr and Shakespeare express concerns about the combined effects of over-hyped media stories

which exaggerate the validity of gene-for claims and the fact that in modern consumer societies

there are profit seeking corporations more than happy to create and/or respond to consumer

demand. We are bombarded by marketing messages informing us about new products and

services which will supposedly improve our lives. Furthermore, advertisers attempt to convince

consumers that they are somehow entitled to enjoy the benefits of the thousands of products on

offer. You might recall that famous advertising slogan “You deserve a break today.”

It seems Kerr and Shakespeare anticipated the emergence of companies such as 23andMe which

now offer genetic testing to consumers. 23 and Me provides customers with reports that identify

correlations between their genotypes and supposedly “undesirable” traits. Previously in this

course we discussed the challenges associated with attributing causality to correlations; the fact

that certain traits are the result of gene-environment interaction (e.g., 5-HTT and depression);

and, the challenges associated with interpreting the heritability statistic. Is it not possible that

consumers will misinterpret and/or overreact to the information provided by a company like

23andMe? Even more disconcerting, is thinking about what sorts of services may one day be on

offer should the employment of CRISPR to design human embryos become legal.

Kerr and Shakespeare contend that governments which support neoliberal policies such as a

reduction in government regulation of business activity may be vulnerable to pressure from

businesses to liberalize the rules around genetic engineering. They note that many governments

rely on corporate research and advice when developing their regulatory frameworks. In addition,

students may have noticed that in the recent US presidential election campaign both Bernie

Sanders and Donald Trump described the US political system as a “rigged game” in which

powerful corporate contributors are able to buy the loyalty of politicians and have the regulatory

environment changed if it inhibits the pursuit of profit.

Commercial Genetic Testing - the 23andme problem

As Kerr and Shakespeare predicted, the market for commercial genetic testing flourished

following the original decoding of the human genome in 2003. The testing market has benefited

from advances in DNA analysis that have made decoding a person’s genome relatively quick and

inexpensive. And, as the demand for testing services increased many of the worries expressed by

Kerr and Shakespeare in 2002 are becoming realities.

Some commercial genetic testing companies such as Invitae are rated as “clinical grade.” These

companies focus on medical issues such as reproductive problems, hereditary cancers and

pediatric conditions. (Diagnostic genetic tests 2020) Importantly, clinical grade companies

provide professional medical counseling, indeed tests conducted by these companies are often

ordered by practicing medical doctors who in turn provide genetic counseling to their patients.

However, there is another class of genetic testing companies that provide relatively inexpensive

genetic tests for anyone who is willing to pay the fees. These are referred to as direct to

consumer genetic testing (DCGT) companies. Ancestry.com and 23andme are two of the more

well-known DCGT companies. Some of the products these firms offer seem like a bit of

harmless fun. They compare a customer’s DNA to genetic information collected from people

from all around the world to provide assessments of the customer’s ethnic ancestry. Sociology

207 students might find some of the television ads promoting this service somewhat ludicrous. In

one ad a man who discovers he has German ancestry is somehow compelled to start wearing

lederhosen (traditional short leather pants). Similarly, a woman who learns she has Native

American ancestry is suddenly attracted to Aboriginal art. If the appeal of lederhosen was indeed

influenced by genetics, would the person not have discovered this earlier in life? How likely is it

that there are specific genes that cause one to wear leather pants or be drawn to Pueblo pottery?

Unfortunately, these companies’ activities go well beyond speculations about ethnic ancestry

(23andme 2020). They also let customers know whether any of their genes pose potential health

risks. And, since this information is provided directly to the customer it is not mediated by

medical professionals. There is no personal medical counseling delivered along with the result.

As we have observed in Sociology 207, the associations between certain genes and harmful

medical conditions are often based on correlational studies (Harvard Health 2010). The average

consumer may not be aware of the importance of knowing the strength of a correlation. Is the

correlation strong or weak? And, they may not appreciate that correlations do not always

demonstrate causal relationships. Furthermore, we know that many traits are influenced by

multiple genes (e.g., like MAGOTS: many associated genes of tiny significance). Having just

one of the multiple genes associated with a trait may not be of any medical significance. It can

require specific genetic combinations to produce a specific trait. Furthermore, as we have learned

in this course the actions of many genes that may be in a person’s genotype may never appear in

their phenotype or behaviour in the absence of the appropriate environmental stimulation. We

saw this in several examples including the effects of childhood trauma in relation to activation of

the effects of the short version of 5-HTT, one of the many genes associated with depression.

Suppose a person was informed that they have a genetic code associated with a condition such as

diabetes on the basis of a weak correlational link between one of their genes and some people

who have diabetes. Without the mediation of a medical professional they may become far more

alarmed than is necessary. What if they decided not to have children based on a report from

23andme? Or what about BRCA1 and BRCA 2, the genes that have been associated with breast

cancer? Is learning that one has one of these genes something that should be presented to them in

a report from 23andme or by a trained genetic counselor or other qualified medical professional?

The CBC MarketPlace program you are required to view for this unit clearly demonstrates that

DCGT companies are capable of making mistakes. The errors described by MarketPlace

primarily involve ethnic ancestry testing. However, one might reasonably wonder whether these

companies’ reports on the propensity to inherit health threatening conditions are similarly subject

to error.

Also troubling, is the potential for the loss of genetic privacy when people submit their DNA to

for-profit companies. DCGT companies are currently selling aggregated genetic data to various

organizations such as insurance companies (the anonymity of individuals is purportedly

protected in these situations).

Similarly, DCGT companies are assisting law enforcement in tracking down suspects. If police

find the DNA of an unknown person at a crime scene, they can send it to a testing company. The

testing company then compares the unknown suspect’s DNA to the DNA of the thousands of

individuals in their database. This can allow the testing company to identify any close relatives

of the suspect who have had their DNA tested. Police then contact these people to find out who

in their family might be the alleged criminal. The news media, especially in the US, are expert at

obtaining leaks from police investigations. So much for privacy. Would you like your neighbours

or the media to find out that someone related to you is the suspect in a serious crime? Would

everything be fine if your relative was eventually found not guilty – or would the accusation

alone continue to haunt the family’s reputation?

In the US there is currently no protection of genetic privacy available if one is applying for

health and life insurance. If you have had your DNA tested you are legally obligated to pass that

information on to insurers. We are lucky that in Canada the health care system treats everyone

equally regardless of their genetics. However, the life and disability insurance industry is not

under such obligations. There is concern that the DCGT companies might offer genetic

information to insurers for a fee. Another concern is the possibility that someone who planned to

commit a crime submitted their DNA to a testing company using your name. If you had not

previously sent in your DNA, you might be the principal suspect – at least until another DNA

test was done. Being arrested as a suspected serial killer or pedophile could be a life altering

experience.

Genetic upper and underclasses

For the sake of illustration, let us suppose that the availability of genetic information and the

capacity to edit the human genome does indeed produce some actual benefits. One might expect

some prospective parents will employ technologies like CRISPR to produce children less likely

to inherit illness and disability.

We know that the scenario just described does not account for the interaction of genotypes with

physical and social environments. Assumptions about the relationship between genes and

phenotypical outcomes are often very difficult to make because the evidence is far from clear.

However, notwithstanding this qualification, it is possible that some parents will be influenced

by media hype and misinterpreted statistical evidence and seek to choose the best genes available

for their prospective children.

Furthermore, despite the questionable scientific validity of many gene-for claims, if enough

people believe them to be correct and act on that information we could expect growth in the

population of people born with supposedly optimal genetic codes. This could have significant

social implications.

At the time Kerr and Shakespeare wrote Genetic Politics: From eugenics to genome, tinkering

with the genetic codes of human embryos and germ cells was illegal. This remains the case in

most developed countries today. (The recent exception made in the UK for mitochondrial DNA

was noted above.) It is nonetheless conceivable that the regulatory environment could change in

the future, making technologies such as CRISPR available. And, even if such technology was not

legally available to parents in a country such as Canada or the US, people might still have the

opportunity to travel to other jurisdictions around the world which do not regulate genomics to

have procedures performed.

Kerr and Shakespeare speculate that if such opportunities become available and are not funded

by state Medicare programs, it is likely that those with the wealth required to purchase gene

editing procedures could view the resulting offspring as superior to the offspring of those who

cannot afford such procedures. Whether or not there is any scientific basis in claims about the

superiority of genetically designed offspring compared with naturally conceived children, we

could see the development of a class of wealthy people who perceive their children to be

genetically superior to the children of the poor. Indeed, this sort of scenario would add a new and

troublesome twist to research projects which attempt to revisit Francis Galton’s 19th century

hypothesis – eminent people tend to produce eminent offspring at a higher rate than the

non-eminent.

10.5 Chapers 10 and 11 Ethics, the regulatory environment and policy prescriptions

Gattaca gets it

Students are encouraged to view the 1997 motion picture, Gattaca, written and directed by

Andrew Niccol and produced by Columbia Pictures. Gattaca presents us with a dystopian, yet,

technologically advanced future civilization. In this fictional society the editing of embryos has

become commonplace. People with supposedly optimal genetics are given the best careers

available (such as astronaut) while people with less desirable genetic codes do all the mundane

work (such as janitor). Genetic privacy is virtually non-existent and prejudice against disability

has been normalized.

There is an uncanny similarity between the dystopian society predicted by Niccol in Gattaca and

the warnings that Kerr and Shakespeare present us with in Chapters 6-11.

Ethical challenges and risks

Chapters 10 and 11 in Kerr and Shakespeare (2002) explore the fields of biomedical ethics and

the regulatory environments in which genetic research and its application occur. The ethical

dilemmas associated with genomics are discussed and we are prompted to wonder whether

medical and scientific experts and corporations can be entrusted with deciding our genetic future.

Students might recall the lack of criticism levelled at 20th century eugenics programs by either

medical professionals or academics. Even in Nazi Germany where negative eugenics reached its

greatest level of depravity, medical professionals and academics stood by while people deemed

to have inferior genetics were euthanized.

Rather than rely solely on the “experts” and self-interested bioengineering companies, citizens in

democratic countries and their governments should be engaged in broad-based debate and

decision making processes to determine how to manage our genomic future. As we observed in

Unit #2 with respect to domestic livestock and pets there can be risks associated with the

misapplication of new technologies. We need to think carefully about how we can best make use

of modern genetic science. To that end Kerr and Shakespeare 2002:186) present readers with a

seven point policy prescription, intended to prevent injustice and adverse unintended

consequences due to backdoor eugenics.

Kerr and Shakespeare’s seven point policy prescription

Kerr and Shakespeare’s seven point policy prescription is summarized below.

More robust regulation around genetic privacy is required.

The patenting of genes and genetic technology need to be more forcibly restricted around the

world.

We need to step back from implementing further genetic screening in the National Health

Service (the agency in the UK which administers that country’s version of Medicare).

The private sector must be controlled more effectively and prevented from directing government

health policy and drug regulation.

The commercial market for genetic screening tests (e.g., 23andMe) must be staunched.

Prenatal tests for minor genetic disorders should not be developed and when such information is

available it should be ignored.

Research into behavioural genetics should be stopped, or at the very least, seriously curtailed.

Disussion forum question

Do you agree with Kerr and Shakespeare’s contention that the use of the latest genetic

technology to eliminate genetic conditions related to disability will generate increased prejudice

and discrimination against those people who continue to experience disability? As a follow-up

question are there other genetic “enhancements,” that people may select for their children that

might increase prejudice and discrimination in society; especially if some people cannot afford

designer baby technology perhaps because they cannot afford to travel to a country where it is

legal? Any examples you can come up with will make for a better answer.

Response n d

I do agree with Kerr and Shakespeare’s idea that genetic technology and its utilization could lead

to further discrimination and/or prejudice towards those with disabilities. It would lead to the

mind state that “we can fix this, so why are you disabled?”. In my personal opinion I don’t see

any problem with someone being disabled, the only thing I would like to see is the stigma of

disability broken down and challenged on a daily bases not only by those who are disabled but

also people who do not experience it daily. Ableism is still very prominent in our society,

whereas I feel we should have progressed more by now in that aspect.

Other genetic enhancements could go in a horrible direction as well (as mentioned, would this

sort of thing be available to all or only the wealthy whom can afford it?) I don’t think

enhancements for intelligence, athletic ability, vanity or the like should ever be up for offer, and I

definitely believe if it was that it would be a point of contention for those who strive to make the

world around them less judgmental or prejudiced.