Genetics & Ethics

Philosophy 2803
Lecture X
April 9, 2002
Introduction
 Tonight’s class will sketch some ethical
issues raised by genetics

 Focus will be on genetic testing since

this is currently available

 There are many other ways in which

genetics raises ethical issues, e.g.,
genetic engineering, gene therapy
Three Main Reasons Why Genetics
is Ethically Interesting
1. Genetic information often identifies risks of medical
conditions that don’t yet affect the patient
– The ‘at risk’ patient

2. Genetic information is about families as well as

individuals
– As such, it sometimes doesn’t fit well into our usual
individualistic ways of thinking about consent, confidentiality,
etc.

3. Genetic research is commercially driven to a very

substantial degree
– This raises questions about whether it is legitimate to allow
genes to be ‘owned’ and what people should expect in return
for participating in genetic research
Case Study: Huntington’s Disease

 A disease which causes deterioration of nerve cells in

the brain

 Slowly destroys the affected individual's ability to

walk, think, swallow, talk, …

 Normally begins affecting people when they are

between 30 and 50 years old

 Death (due to pneumonia, heart failure or other

complications) usually occurs between 10 and 25
years after symptoms first appear
Genetics for Philosophers
 Our chromosomes (which
contain our genes) come in
pairs.

 We inherit one chromosome

from each pair from each of
our parents

 The paired chromosomes,

while similar, are not
identical

 About 1 in 10,000 people are

thought to carry a mutation
linked to Huntington’s
Disease
Inheriting Huntington’s
 Huntington’s is an example
of a dominant genetic
condition

– i.e., you only need to inherit

one copy of a gene for
Huntington’s in order to be
almost certain to contract
the condition at some point

 If one of your parents carries

a mutation linked to
Huntington’s, you have a
50% chance of having
inherited such a gene
yourself.
Testing for Huntington’s
 Huntington’s is caused by having an enlarged gene
on chromosome 4

 Since the early 90’s a very reliable genetic test for

such an enlargement has existed

 Even if you presently show no signs of Huntington’s,

it can tell you with great reliability whether you carry a
gene that makes it extraordinarily likely that you will
develop Huntington’s.

 There is no cure
Groupwork
 1. If you carry a gene linked to Huntington’s,
any children you have will be at a 50% risk of
carrying the same gene

– Some, including Purdy (pp. 490-499), suggest this

may make it immoral for you to attempt to have
children
– Is this correct?

 2. Suppose you knew that Huntington’s was

in your family. Would you want to be tested
for it?
Assessing Purdy’s Argument
 “if it is true that sufferers [from Huntington’s] live
substantially worse lives than do normal persons,
those who might transmit it should not have children.”
(496)

 Response: this is a pretty big ‘if’

– It seems to require making judgments about what sort of live

is worth living that are deeply troubling

 Nonetheless, thinking about this issue should allow

you to appreciate why genetics raises some distinct
ethical questions.
Some Issues Raised by Genetic
Testing

1. Risks of being tested

2. Problems posed by public conceptions
of genetics
3. Problems with confidentiality &
consent
4. ‘Commodifying’ our genes
1. Risks of Being Tested
 Psychological

– If positive for a ‘bad’ mutation:

 Burden of knowing you have the predisposition,
particularly if no treatment is available
 Genetic determinism: possible overestimation of
likelihood of actually becoming afflicted
– The situation with Huntington’s is not typical

– If negative:
 Evidence of ‘survivor guilt’ in some cases
 Possible over-confidence
– E.g., thinking you won’t get breast cancer because your
test for BRCA1 & 2 came out OK
More Risks of Being Tested
 Practical
– Employment
– Life insurance
– Health Insurance (more important in US)

 Is it fair for companies to take genetic information

into account when making hiring decisions or
decisions about whether to insure a person?

 Do these risks justify being paternalistic regarding

who is given a genetic test, as DeGrazia suggests
(pp. 474-490)?
– ‘Traditionally,’ tests have not been given without genetic
counselling, although this is likely to change.
– Recall the Rule of Justified Paternalism
2. Popular Beliefs about Genetics

 Genetic Determinism: The common misconception

that all genes work like the gene for Huntington’s, i.e.,
the idea that having a particular gene will guarantee
having a particular trait

– Huntington’s is an atypical example

– For the most part, having a particular gene mutation will just
increase your chance of developing some trait, not
guarantee it.

– Furthermore, most ‘genetic conditions’ are the result of a

number of different gene mutations (as well as interactions
with the environment)

 We are unlikely to discover ‘the gene makes you good at math’

3. Confidentiality & Consent

 In medical ethics, a great deal of importance is

placed on the idea of individual informed consent

– One aspect of this is that your personal health information is

not supposed to be released without your consent

– But the nature of genetic information sometimes gets in the

way of this

– Finding out genetic information about you also reveals

genetic information about the people you’re related to
Case: Confidentiality & Huntington’s

 Suppose there is a known history of Huntington’s in your family,

but you don’t want to know whether you personally carry a
mutation for Huntington’s.

 Your son does, however. He gets tested and discovers that he

has a mutation for Huntington’s.

 This almost guarantees that you also carry such a mutation.

 We have discovered personal information about you without

your consent

– How should we deal with this?

– Should we put restrictions on who your son can reveal this
information to?
Confidentiality & Duty to Warn
 Most ethicists agree that, while confidentiality is
important, there are situations in which confidentiality
can be broken

 The most common example involves a duty to warn

– E.g., a psychiatrist who is told by one of his patients that the
patient plans to kill his wife tomorrow

 Is there a genetic duty to warn?

– Must we warn family members who are at risk?

– Should we warn employers if a person possesses a genetic
mutation that may someday pose a threat?
 E.g., the bus driver at high genetic risk of heart failure
Case Study: BRCA 1 & 2
 About 5-10% of breast cancer is thought to
be hereditary

 It has been discovered that those women

with particular mutations in the BRCA 1 or 2
gene are at an elevated risk of contracting
breast cancer

– Without these mutations: 2% by age 50, 7%

by age 70
– With the mutations: 33-50% by age 50, 56-
87% by age 70
– Note: information is from Myriad Genetics’
website
Myriad Genetics & BRCA
 Myriad Genetics (Utah, USA) holds
patents on BRCA 1 & 2

 They have recently been insisting

that only they (or companies they
have a licensing agreement with)
may perform testing for the BRCA 1
& 2 mutations.

 The government of Ontario has

refused to obey, preferring to
perform its own test, which it claims
is both cheaper and more accurate
4. Commodifying Genes

 The Myriad example raises a number of

questions regarding the
commercialization of genetic research

– Is gene patenting ethically acceptable?

– If our genes are a valuable commercial
resource, should we be paid for them?
– Are genes property or person?
Newfoundland & Labrador
 Questions about commercial research are particularly
relevant in Newfoundland and Labrador

 Most of the present population of the province can

trace their ancestry back to settlers in the 1800s or
earlier

– Some argue that Newfoundland has a ‘homogeneous’ gene

pool that is very valuable for genetic research

– We have an elevated rate of some genetically influenced

conditions (e.g., psoriasis)

 For these reasons, Newfoundland had been

described as "something of a motherlode to the drug
development industry" (National Post, 2000).
Should You Be Paid for Your DNA?

 There has been some local debate

about whether individuals should be
paid for providing their DNA to
researchers

– One former professor at MUN suggested

$50,000 (US) per donation
A Recent Report
 Policy Implications of Commercial Human Genetic
Research in Newfoundland and Labrador
– Pullman & Latus, 2003

 Argues that human DNA should be viewed as neither

property nor person, but something in between

– Payments may sometimes be OK, but not individual ones.

– In keeping with our general approach to health care as a
public good, payment should go to improve health care &
research
– Gene patenting should be reconsidered

 This by no means settles the issue

So what was the point of all this?

 Genetics provides a good final example

for this course

– New developments in health care almost

invariably raises new ethical problems
– New developments often cast old problems
in new light
– Health ethics will never run out of problems
But …
 ‘All you’ve done is raise questions and problems.
What was the point of that?’

 Answer #1: Sometimes these problems don’t have

clear solutions.
– Sometimes making people sensitive to problems is the best
solution we can hope for
– E.g., while we may not be able to stop a genetic test on
Mary’s son from revealing information about Mary, but by
being aware we can at least try to minimize this problem

 Answer #2: Ethics is hard

– Progress does occur, but it’s very slow because these are
difficult problems.
– The least we can do is subject these issues to a serious
public debate.