MORAL PROBLEMS INVOLVING HUMAN GENETICS

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MORAL PROBLEMS INVOLVINGHUMAN GENETICS
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The US Human Genome Project HGP

• Genome an organism's complete DNA
• DNA composed of 4 chemicals -- A, T, C, G --
  that are repeated throughout a genome.
• The human genome has 3 billion pairs of these
  chemicals.
• Ordering of A, T, C, G is important the order is
  what determines genetic diversity.
• HGP began in 1990 under direction of DOE NIH
  was to have ended in 2005, but will end instead
  in 2003.

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The US Human Genome Project HGP

• The goals of HGP are to
• identify all of the approximately 30,000 genes in
  human DNA,
• determine the sequences of the 3 billion chemical
  base pairs that make up human DNA,
• store this information in databases,
• improve tools for data analysis,
• transfer related technologies to the private
  sector, and
• address the ethical, legal, and social issues
  that may arise from the project.

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The US Human Genome Project HGP

• June 26, 2000 President Clinton announces the
  the international Human Genome Project and Calera
  Genomic Corporation both completed an initial
  sequencing of the human genome.
• February 2001 preliminary papers on the draft of
  the sequencing are published in Science and
  Nature.

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The US Human Genome Project HGP

• Potential benefits molecular medicine
• Improved diagnosis of disease
• Earlier detection of genetic predispositions to
  disease
• Gene therapy replacement of defective genes
• Potential benefits microbial genomics
• New energy sources (biofuels)
• Environmental monitoring to detect pollutants
• Protection from biological and chemical warfare
• Safe, efficient toxic waste cleanup

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The US Human Genome Project HGP

• Potential benefits risk assessment
• Assess health damage and risks caused by
  radiation exposure, mutagenic chemicals and
  cancer-causing toxins.
• Reduce the likelihood of heritable mutations
  Improved diagnosis of disease
• Potential benefits bioarchaelology,
  anthropology, evolution, and human migration
• Study evolution through mutations in lineages
• Study migration of different population groups
  based on female genetic inheritance
• Study mutations on the Y chromosome to trace
  lineage and migration of males

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The US Human Genome Project HGP

• Potential benefits DNA forensics
• Identify potential suspects whose DNA may match
  evidence left at crime scenes
• Exonerate persons wrongly accused of crimes
• Identify crime and catastrophe victims
• Establish paternity and other family
  relationships
• Identify endangered and protected species as an
  aid to wildlife officials (could be used for
  prosecuting poachers)
• Match organ donors with recipients in transplant
  programs

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The US Human Genome Project HGP

• Agriculture, livestock breeding, bioprocessing
• Disease-, insect-, and drought-resistant crops
• Healthier, more productive, disease-resistant
  farm animals
• More nutritious produce
• Biopesticides
• Edible vaccines incorporated into food products

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The US Human Genome Project HGP

• ELSI what are they?
• DOE and NIH devoted 3-5 of the HGP budget tot
  the study of ethical, legal, and social issues
  raised by HGP.
• ELSI some of the ethical issues
• Who owns your genetic information -- who should
  have the right to release that information?
• Is it morally permissible for a potential
  employer to demand genetic screening?
• Should one test for a genetic disease is there is
  no known treatment for it?
• Is it morally permissible for adults to have
  their children tested for adult-onset illnesses?

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The US Human Genome Project HGP

• ELSI some of the ethical issues
• Do genes determine human behavior? Is there no
  free will? Are humans morally responsible for
  what they do?
• Should genetic research be used to enhance an
  individual's traits, not just treat an
  individual's weaknesses?
• Should genetic counselors ever withhold
  information?

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The US Human Genome Project HGP

• ELSI some of the legal issues
• Should the government prohibit potential
  employers from requiring job applicants to
  undergo genetic screening?
• Should insurance companies be given one's genetic
  information?
• Can anyone own a gene? Can DNA sequences be
  patented?
• Should there be compulsory genetic screening for
  certain diseases?
• Should there be compulsory sterilization for
  those who are genetically unfit?
• Should there by any legal restraints on the
  abortion of fetuses deemed to be genetically
  unfit?

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The US Human Genome Project HGP

• ELSI some of the social issues
• Will there by any impact on minority communities?
• Will there be any impact on social customs such
  as marriage -- the choosing of a genetically
  compatible mate?
• What if IQ or physical prowess is genetically
  correlated with hair color? With sex? With race?
• Will new genetic information raise social
  concerns about the safety of food?

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II. Two models "What obligations does a
genetics counselor have?"

• The paternal model
• The picture
• On this model, would withholding information be
  morally permissible?

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II. Two models "What obligations does a
genetics counselor have?"

• The technician model
• The picture
• On this model, would withholding information be
  morally permissible?

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III. Is the paternal model plausible?

• Autonomy
• Justice
• Epistemic concern about model's presupposition

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IV. Is the technician model plausible?

• Does the mechanic analogy support the model?
• Consent

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V. The contracted clinician model

• The picture
• Macklin CW, 332.2
• Would the withholding of information be morally
  permissible?
• Is the counselor obligated to remain ethically
  neutral?
• No, may offer advice.
• No, may refuse to participate on moral grounds

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VI. What sort of contract ought the genetics
counselor accept?

• Is it morally permissible for a counselor to
  agree to refrain from informing a client about
  the detection of untreatable diseases?
• Ought a counselor agree to inform a client about
  the detection of untreatable or potentially fatal
  diseases for which the client is genetically
  disposed?
• What clients ought to be told CW, 346.1

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VII. A text case XYY screening

• See Macklin CW, 328.2
• Test case
• Martha Lawrence, age 41, is unexpectedly
  pregnant has sons ages 16 and 13.
• Referred for genetic screening for Down's at her
  age, 40 times more likely than a woman under 25
  to give birth to Down's child.
• The fetus not afflicted with Down's.
• BUT... The fetus is an XYY male.

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VII. A text case XYY screening

• Guidelines
• The burden of justification...
• Evidence that the information will harm...
• Evidence that information could enhance...
• Future help...