GENETICS, ETHICS, AND PHYSICIANS

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GENETICS, ETHICS, AND PHYSICIANS

• Leonard M. Fleck, Ph.D.
• Michigan State University

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TWO PREMISES

• We are beyond the age of genetic innocence
• We have entered (and cannot exit) the age of
  genetic responsibility
• Philip Kitcher, Lives to Come The Genetic
  Revolution and Human Possibilities

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BACKGROUND

• Genetic tests are different (in morally important
  ways) from non-genetic tests
• Popular belief in genetic determinism our genome
  represents coded future diary
• History of eugenics
• Risks of genetic discrimination health care and
  employment
• Links to reproductive decisions

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LEVELS OF MORAL JUDGMENT

• Personal
• Professional
• Social (public policy)

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VALUES

• Genetic Privacy
• Procreative Liberty
• Genetic Responsibility (personal)
• Genetic Responsibility (social)
• Best Interests of Future Possible Children
• General Welfare of Society
• Health Care Justice

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VALUES

• Obligations to do no Harm
• Respect for Incipient Human Life
• Respect for Persons with Disabilities
• Non-Discrimination
• Respect for Cultural and Religious Differences

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DOMAINS OF MORAL ACTION

• Domain of Moral Obligation things we either MUST
  do or MUST REFRAIN from doing (forbidden actions)
• Domain of Moral Permissibility things we are
  free to do or refrain from doing without fear of
  moral criticism
• Domain of Moral Ideals conduct worthy of the
  highest moral praise (saintly action)

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CASE

• A couple knows they are at risk for having a
  child with cystic fibrosis (or Fragile X Syndrome
• They want to have a child of their own, but they
  do not wish to impose this risk on the child
• They want your help in accessing a non-standard
  form of reproduction

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QUESTIONS

• Should this couple be morally commended for
  making a difficult, but genetically responsible
  decision? That is, are they to be commended for
  trying to avoid (at expense and burden to
  themselves) imposing unnecessary suffering on
  this future possible child?

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QUESTIONS

• Should this couple be morally criticized for
  making a decision that is invidiously
  discriminatory? That is, are they saying by
  their actions that they wish to reject a child
  with a serious genetic disability because they
  would prefer a more perfect child?

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QUESTIONS

• Should a good doctor acquiesce to the request of
  this couple for access to alternate reproductive
  options because their request is within the moral
  bounds of procreative/ genetic liberty?
• If so, what sorts of choices would you see (as a
  physician) as beyond the bounds of procreative/
  genetic liberty?

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QUESTIONS

• Is the decision of the couple in this case really
  a matter of genetic privacy? That is, is their
  physician morally obligated (as a physician) to
  be absolutely neutral regarding their
  choice----do no more than advice them of
  reproductive options, then facilitate access?

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QUESTIONS

• If this couple wanted to access pre- implantation
  genetic diagnosis so that they could choose an
  eight-cell embryo that was free of a particular
  genetic defect, would you see this as a morally
  permissible option, given the number of embryos
  that will be discarded?

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MY RESPONSE

• Morally speaking, choosing PGD should be thought
  of as a matter of procreative liberty.
• Parents are not violating the rights of anyone
  (from a secular perspective)
• Parents intent is to act in the best interests of
  a future possible child
• No obvious social harm in permitting parents to
  make such choices

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MY RESPONSE

• To understand the moral logic behind my claim,
  imagine a couple where the woman was exposed to a
  virus with potentially teratagenic effects for an
  early pregnancy. Her physician advises the couple
  to have only protected sex for 3 months (which
  they do,conceiving a child 5 months later. They
  chose an unaffected rather than an affected
  child, which is morally unobjectionable.

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MY RESPONSE

• NOTE There are major moral virtues for ALL
  attached to the permissibility of PGD
• Couples who refuse PGD are not open to moral
  criticism, so long as they have been thoughtful
  and are prepared to accept the consequences
• Society would be open to moral criticism if we
  reduced access to needed health care or related
  supportive services for affected children as a
  way of discouraging prospective parents from
  making bad genetic decisions.

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Professional Ethics and PGD

• I would argue that it would be morally wrong for
  a physician to fail to inform a couple concerned
  about the conception of a child with a serious
  genetic disorder of the option of PGD.
• Note If this physician has personal moral
  objections to PGD, he has no obligation to make a
  referral. BUT he may not deny this couple the
  medical information they need to make an informed
  choice.

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Social Policy and PGD

• It is very difficult to imagine what would
  justify a restrictive or prohibitive policy with
  regard to PGD in a liberal pluralistic democratic
  tolerant society. No public interest is
  threatened by the option.
• A socially harder question is whether a society
  could rightly encourage use of PGD through public
  educational efforts or through explicit social
  subsidies.

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QUESTION

• There are some couples who are both dwarves or
  both deaf. They seek to use PGD to choose an
  embryo that will be either deaf or a dwarf like
  themselves. Is such a use of this technology as
  morally permissible as using it to avoid having a
  child with Tay Sachs or Huntingtons or fragile X
  or cystic fibrosis etc.?

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QUESTIONS

• If the cost of a successful pregnancy via PGD is
  about 40,000, would you work with other
  physicians to see to it that such costs are
  covered either by private insurance or through a
  public financing mechanism? That is, do you see
  such funding as a matter of social justice?

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Justice and PGD

• Claim 1 A justice argument can be made for
  public funding for PGD for couples at risk of
  having children who would otherwise be have
  serious genetic disorders manifesting themselves
  from birth on.
• Claim 2 No justice argument will support PGD
  for couples at risk of having children with
  mid-life to late life genetic disorders.

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Justice and PGD

• Claim 1 Justice arguments support PGD for
  early onset genetic disorders because of
• Protecting fair equality of opportunity for these
  future possible children
• Protecting net welfare of these children,
  preventing genetic harms that would reduce both
  length and quality of life
• Efficiency reasons social costs of PGD are
  quickly paid for through reduced health care
  needs of these children

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Justice and PGD

• Claim 2 Justice does not require PGD for late
  in life genetic disorders because
• The causal connections to effecting the disorder
  are too uncertain (except for HD)
• Medicine may produce cheap genetic interventions
  over the next several decades to minimize
  actualization of these genetic risks
• Efficiency arguments speak against PGD for later
  disorders since large costs are up front and
  savings are uncertain and very far in the future.

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Justice and PGD Criticisms

• Health care justice is about NEEDS. But parents
  at risk of having a child with CF or Tay Sachs or
  Lesch-Nyhan do not NEED to have children.
  Alternatively, they do not NEED to have children
  that are genetically their own. They have the
  option of cheaper alternative reproductive
  methods, such as sperm or ova donors.

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Justice and PGD Criticisms

• Ordinarily health care needs belong to a person
  who is actual and who is suffering and whose
  suffering could be relieved though available
  health therapies. But PGD involves a
  metaphysically odd situation in that we meet the
  alleged health need by REPLACING one future
  possible person with a different future possible
  person lacking some specific genetic
  vulnerability.

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Justice and PGD Criticisms

• An implication of the last criticism is that it
  would be morally permissible (not unjust) for
  society to provide resources for PGD in the case
  of early-onset genetic disorders. BUT this is not
  morally equivalent to saying that such social
  assistance is morally REQUIRED as a matter of
  justice. There may be too many other health care
  needs that make stronger claims of justice on
  limited social resources.

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Justice and PGD the Disability Critique

• PGD does not represent a threat to the rights or
  interests or dignity of persons with
  disabilities. The disability is dis-valued not
  the person with it.
• Imagine successful embryonic stem cell research
  to repair devastating spinal cord injuries. Vast
  majority of SCI patients might readily embrace
  such a therapy, and we would be wrong to withhold
  it from them on grounds that this represented
  disrespect for persons with disabilities. Justice
  would REQUIRE funding this therapy for all
  desiring it.

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Justice and PGD

• Note 1 No social policy ought to require couples
  at risk of having a child with a serious genetic
  disorder either to use PGD or to refrain from
  having children. This is a clear implication of
  our social commitment to political liberalism.
• Note 2 A just liberal society must provide
  social resources needed to maintain fair equality
  of opportunity for children born with serious
  genetic disorders.

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Justice and PGD

• Note 3 Couples who choose to avoid using PGD for
  religious or philosophic reasons (though at risk
  for having children with serious genetic
  disorders) must extend the same respect to
  couples who would use PGD in a liberal society,
  or who would advocate public funding for this
  technology.

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Justice and PGD

• Note 4 A JUST liberal society is one in which
  there are fair terms of cooperation, which is
  what is expressed on Note 3. A liberal society
  is one in which there is MUTUAL RESPECT for
  diverse reasonable conceptions of what it means
  to lead a goods life.
• Note 5 Such mutual respect will be increasingly
  necessary for a peaceful liberal society in which
  genetic reproductive interventions become
  increasingly pervasive.

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Physicians and the Future

• Physicians will have to play a critical role in
  the social education and social conversations
  necessary to think through the ethical and public
  policy options that become available with
  advances in genetic technologies.
• Physicians will be critical to protecting the
  liberal foundations of our society, most
  especially the patterns of mutual respect needed
  for maintaining just policies and social
  practices in these matters.

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FANCONIS CASE

• A couple has a child with Fanconis anemia. This
  child will die without a well matched bone marrow
  transplant. They wish to conceive via
  pre-implantation genetic diagnosis to identify a
  well-matched donor/ future child embryo. Q Is it
  morally permissible for good doctors to assist
  couples in achieving this objective?

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The FUTURE Embrace It?

• It took about 12 years to complete a map of the
  entire Human Genome. But a researcher at MIT is
  working on a technique for uncoiling an
  individuals DNA and having it machine-read in
  about three hours at a cost of about 1000. Is
  this a technology physicians and society at large
  should welcome? Why or why not?