Dowling
College Fall 2002 ASC128C Genetic Ethics
Christian
Perring, Ph.D.
Class
notes.
Introductory
Issues
What
does eugenics mean?
We
need to pay attention to language
“defective
child”
What
are parents’ responsibilities to their children?
How
much should we tell children about family history?
What
motivations do people have in deciding to have children?
Do
parents have a moral obligation to make sure their children have no genetic
defects?
What
is the correct definition of health?
What
counts as disorder, disease, illness, malady?
Leon
Kass: The Wisdom of Repugnance: Why we should ban the cloning of humans
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The
Expertise of Scientists
To
what extent can we question what scientists say or the language they use?
We
can question language such as “defective child”.
Scientists
often smuggle in assumptions about value in their language that is beyond their
expertise.
What
is the sociology of science trying to do?
Two
approaches to the philosophy of science.
Traditional
approach:
Science is about the accumulation of knowledge, and
it steadily increases with time.
Scientific research proceeds using experiments testing theories, and
formulating theories to suggest new experiments. Science is about facts, not about values. Science is morally neutral, and can be used
for good or bad. (Karl Popper, Carl
Hempel.)
Radical
view of science:
Science is a social construction, and is subject to
political and social forces. Science
generally expresses the world view of the culture it is part of. Science does not necessarily progress, but
rather it just changes with the times.
(Thomas Kuhn, Paul Feyerabend.)
Sociologists
of science have been sympathetic to the radical view. They associate this with what is called “the Strong Program” of
sociology of science. The aim of this
program is to show how science is constructed and is subject to social
pressures.
There
is also a “Weak Program” that is compatible with the Traditional view of science
as progressing.
One
helpful way of understanding the debate is this: is science a matter of
discovery or creation? If it is just
discovery, then science is neutral. If
it creating a world-view, then science is almost always biased, or at least it
has a perspective, or an agenda.
The
traditional view says science is objective: science expresses “The View from
Nowhere.” The radical view says that
science is (nearly) always from some perspective.
There
is a common view that we should distinguish between facts and values—generally
associated with the Traditional View.
Facts about the world describe how it is, while values express how the
world should be. Science is about
natural facts.
Often
defenders of the Radical View deny the fact-value distinction. They say that some facts also express
values. “John has cancer.” They would say that disease is an
intrinsically value-laded term. “Jenny
is a defective child.” “Mr Smith is a
murderer.” “Mrs Jones is a bad person.”
Is
there some Archimedean point of view, which may be idealizing, but nevertheless
should be our ideal. Is there in
principle some ideal point of view from which we can be neutral?
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Human
Cloning
Somatic
gene therapy affects only one individual
Germline
therapy affects the individual and all his/her future children.
Germline
therapy is much more morally problematic.
One is affecting future generations.
“Human
cloning” covers a wide range of processes.
What most people think of when the phrase “human cloning” is mentioned
is the cloning of a whole human. But
human cloning can be of body parts or organs: skin, livers, hearts, bone
marrow, etc, for potentially life saving purposes.
The
most controversial part of human cloning is the cloning of whole humans. People give many reasons against human
cloning:
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Feminist
theory and genetics
Feminism
and reproductive rights:
Roe
v Wade (1973 US Supreme Court Decision).
Women have the right to have an abortion up to the point of viability of
the fetus. Around 24 weeks.
Feminism
has argued that women should have the right to choose.
When
it comes to new reproductive technology, feminists have been more divided.
We
can have IVF and surrogate mothers.
This sort of issue raises a lot of questions about the rights of genetic
parents, the birth mother, and poor women.
Women could be exploited. We can
compare the ethics of selling one’s organs.
One might even compare selling the use of one’s body to
prostitution.
________________________________________________
Case
study from Early Warning on Pre-Symptomatic Genetic Testing
Paul
and Michael
What
needs to be decided?
Should
the testing facility let Paul take the test?
One
reason to not let Paul take the test is that Michael does not want to know the
results. They will have the same test
result because they are identical twins.
There is chance or likelihood that Michael would find out the results if
Paul took the test.
Should
the testing facility get involved in family issues?
Issue
of the liability of the testing center should Michael commit suicide.
If
the test is done, should the facility directly tell Michael the results?
Who
is the patient? Is it just Paul or is
it the whole immediate family?
One
model: this is just a financial transaction.
Another
option to reduce the danger of being sued: the facility could contact Michael
and ask him directly whether he wants Paul’s test to be done. If he says no, then refuse to test Paul.
An
additional option is for the facility to give the test to Paul and offer
counseling to both brothers should they want it.
Issue
of confidentiality Vs responsibility towards other family members.
It
might be a good idea to consult with a lawyer about the potential legal
ramifications of doing the test on Paul if Michael goes on to harm himself if
the result is positive.
Paul
could sign a document promising not to tell Michael of the results.
It
is relevant that it is often very hard to keep secrets in families. It would be hard to keep the truth from
Michael.
The
Decision-Making Procedure: Important Steps
What
decisions need to be made?
Who
needs to make the decisions?
What
options are available?
What
considerations need to be taken into account?
Comparison
with HIV testing.
Test
the son and offer him counseling.
Offer
family counseling.
As
the son to invite the father to come in and talk about his situation.
To
what extent should the counselors give their own opinion to the
consultands? Should they give their own
if the consultands ask?
________________________________________________
Carol
should be told, because of the possible results if she is not told:
Reasons
for NOT telling Carol:
How
do we decide which reasons are paramount?
2
different views:
Abhishek (libertarian): a person has
the right to make her own mistakes, and we should not interfere.
Christina: Carol would not object to
the Clinic/Testing Services calling her up and telling her the good test
results.
Other
option: offer more counseling to Carol.
Carol may change her mind.
What
about Carol’s obligations?
Does
Carol have a moral obligation to her daughter to find out if she carries the
defective BRCA1 gene?
What
about the surgeon who might perform the mastectomy and the oophorectomy? Can she require that Carol get the test
results before agreeing to operate?
Would performing the operation violate the physician’s oath “First, do
no harm.”
Is
Carol making an educated decision without the test results? It seems she is lacking objectively
important information.
Would
manage care companies/health insurance authorize the operation without the test
being performed?
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Goals
of genetic counseling
It
is often said thatcounselors should be non-directive.
What
is the aim of counseling generally?
These
forms of counseling are directive.
The counselors give advice.
Problems
for directiveness: the counselor may be wrong in his/her opinion, and give bad
advice. They have limited time and
information. Their involvement will
depend on how active the student is in demanding their attention.
Respecting
patient’s or a client’s autonomy, it is sometimes thought that no direct advice
should be given. But it is not so clear
that giving advice prevents people from making their own decisions.
Model
for genetic counseling is found in Carl Rogers’ counseling: unconditional
positive regard for the client.
Humanistic counseling: the patient should be called a “client.”
Is
it possible to be completely non-directive?
Take acting lessons?
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Genetic
Counseling Case Studies
Review
of the facts:
Normally
we refer to Klinefelter’s children are referred to as male.
There’s
a distinction between sex and gender and gender identity.
What
further facts are relevant? What do we
need to know about Mr & Mrs Brown?
What
is the ethical problem?
·
Who
might be harmed?
·
If
Mrs B has an abortion, the fetus will die.
Mr B may feel a sense of loss, even though he will probably support her
decision. Mrs B could be harmed by the
abortion, and she may suffer emotional consequences (guilt, grief, loss).
·
If
Mrs B does not have an abortion, who might be harmed? The child could be harmed by his mother’s attitudes. The marriage could suffer, hurting all
concerned. The child could be teased
and hurt by other children because of his syndrome.
Who
makes the final decision? Mrs
Brown. Mr Brown should give an
opinion.
What
outcome would be best for all concerned?
The
Browns need to make an informed decision, and the more information they can
have the better.
Find
other ways to convey the information to Mrs B so she will understand it more
fully. She may have fears about how she
will be able to deal with her child’s problems as he grows up. Look for information about long term support
groups to help parents of children with such genetic disorders.
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Genetics,
Freewill and Responsibility
When
are we morally responsible for our actions?
Does genetic information about someone ever reduce their moral
responsibility?
We
are finding genetic information about people’s psychological make-up, and their
tendencies to act in certain ways. E.g.,
criminal tendencies. If people are
predetermined to act in certain ways, it seems that they are not so responsible
for their actions.
Why
do people commit crimes? Some people
have far less of a conscience than other people. Environment and upbringing can be a factor. Genetics can play some factor in people’s
temperaments and character. One can
inherit personality traits from one’s parents.
E.g., being a motherly person, nurturing, quick tempered, aggressive,
stubborn, dishonest, outgoing. It is at
least clear that there is some strong genetic contribution to one’s
character. E.g., being impulsive.
It
follows that to a large extent, we don’t choose our own characters, but they
are formed. It’s also clear that it is
hard to change one’s character. We also
see that there are genetic predispositions to mental disorders: depression,
addiction, bipolar disorder, schizophrenia, ADHD. The mental disorders are not
inevitable, but they are hard to escape.
If
one’s character is not one’s choice, and one’s behavior is to a large extent
determined by one’s character, then we can how responsible we are for our
actions.
If
people can’t control their actions, then how can we hold them morally responsible
for them?
Consider
alcoholism. Is a person responsible for
drinking too much if his behavior is largely caused by his genetic
make-up? We could see his behavior as a
disease needing to be treated or cured.
It
seems for most of these sorts of cases, people still have some opportunity to
choose different courses of action.
Alternative courses of action:
Do
the genetic and environmental facts about a person provide some excuse?
Are praise and blame appropriate?
Pointing
out people’s ability to choose their actions can be helpful.
Blame
can be unhelpful but appropriate.
Blaming might be useful in helping people understand what they have done
wrong, but it can sometimes be crippling.
Self-control
is not all-or-nothing. Resisting
temptation is something that we can be good or bad at, and also we can improve
at.
Should
we medicalize some conditions? Eg.
Alcoholism.
We
can take ethical, psychological, or medical stances towards people’s
behavior. The crucial is to what extent
these different perspectives are compatible.
Taking a psychological or medical stance leads us to treat people has
having psychological or medical problems, while taking an ethical stance leads
us to see them as responsible for their actions.
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Genetics
and Risk Perception
Objective
Risk
Subjective
Perception of Risk
According
to probability theory or game theory, if your expected winnings are positive,
then you should take the risk.
Eg
If you give me $40 and then if when I toss a coin and if it comes up heads I
give you $100 then it would be rational for you to take the bet.
In
many situations, we can predict the overall outcome if there are many
repetitions of the coin toss or chance event.
Some
are risk averse. They feel that what
they would lose if they lose a bet is more important than what they would win
if they win the bet.
Similarly,
some people enjoy betting. With the
lottery, it is not rational according to game theory to play, because your
chances of winning are so slim. They
enjoy the thrill of the game—it can cause an adrenaline rush. There is also the hope of winning without
much sacrifice. This can make a change
to someone’s life—especially if one’s life is not good and one wants some hope
that it will change.
One
interesting question is whether it is irrational to engage in a bet that does
not make sense according to probability theory. The chances are that you will lose money, and gambling can be
addictive. You can justify gambling by
pointing out that it can be fun, it can be a bonding experience, and it can
give hope.
“Social
Construction.”
There
are objective facts about illness and disease, eg, HD. But we can make a distinction between the
objective facts and how people actually think and feel about the disease. There are often trends in how people think
and feel about a disease, and these trends can change over time. So we can talk about how people or society
constructs a disease like HD. The
construction is about the portrayal and representation of the disease, not the
scientific information itself. It is
very relevant to understand how the scientific information is interpreted by
ordinary people.
Often
in discussing disease, we use metaphors that are very revealing about how we
think about those diseases.
(Susan
Sontag, Illness as Metaphor)