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MORAL PROBLEMS INVOLVING HUMAN GENETICS

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II. Two models: 'What obligations does a genetics counselor have?' The paternal model: ... What sort of contract ought the genetics counselor accept? ... – PowerPoint PPT presentation

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Title: MORAL PROBLEMS INVOLVING HUMAN GENETICS


1
MORAL PROBLEMS INVOLVINGHUMAN GENETICS
2
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.

3
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.

4
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.

5
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

6
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

7
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

8
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

9
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?

10
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?

11
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?

12
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?

13
II. Two models "What obligations does a
genetics counselor have?"
  • The paternal model
  • The picture
  • On this model, would withholding information be
    morally permissible?

14
II. Two models "What obligations does a
genetics counselor have?"
  • The technician model
  • The picture
  • On this model, would withholding information be
    morally permissible?

15
III. Is the paternal model plausible?
  • Autonomy
  • Justice
  • Epistemic concern about model's presupposition

16
IV. Is the technician model plausible?
  • Does the mechanic analogy support the model?
  • Consent

17
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

18
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

19
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.

20
VII. A text case XYY screening
  • Guidelines
  • The burden of justification...
  • Evidence that the information will harm...
  • Evidence that information could enhance...
  • Future help...
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