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
§
Risks
of being tested
§
Problems
posed by public conceptions of genetics
§
Problems
with confidentiality & consent
§
‘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.