The Bioethics of the Human Genome Project

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The Bioethics of the Human Genome Project

• Marcella A.McClure, Ph.D.
• Professor
• Department of Microbiology and Center for
  Computational Biology

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Status of the Human Genome Project

• 3,200,000 Kbp of the euchromatic portion of the
  human chromosomes are being sequenced
• Heterochromatic portion is not being done
• As of July, 2003
• Non-redundant sequence only
• 99.9 of euchromatic portion has been done

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WHOSE GENOME GOT SEQUENCED?

• The public, government run Human Genome Project
  is a composite of the
• genetic information of 21individuals
  representing the diversity of the human
• species. So this information represents the
  Human Genome and not a specific
• ethnicity or class of humans.
• Humans are more that 99 identical to one
  another. Therefore, the
• reference genome can be used to study all of
  our basic functions
• as well as the variation in individual human
  genomes that may cause disease
• and drug responsiveness. The simplest form of
  variation is called the single
• nucleotide polymorphism (SNP).
• Regions of the human genome that exhibit
  polymorphism are being sequenced
• to provide references for different ethnic
  populations for diagnosis or disorders.

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So EXACTLY what are we talking about here ?
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BIOETHICS, the definitionThe ethics of applying
biological technology and information to
individuals.
ETHICS, the definitionthe standard or moral
code of a philosopher, government, religion,
profession or any other group
McClure,2002
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http//www.accessexcellence.org/LC/SER/BE/beknowma
p.html
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http//www.accessexcellence.org/LC/SER/BE/beknowma
p.html
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The Talmud advises against circumcise of brothers
of bleeders. This is an ethical decision based on
concern that the individual might die over the
culture necessity of circumcision.
What does the bioethics of circumcision tell us?
That the application of bioethics varies over
time and space
Many cultures and religions have taboos against
breading between close relatives.
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Who decides the standards or moral code of
Bioethics?The technology information
revolution in biology is creating a new world. We
as students, teachers, researchers, citizens and
human beings have to participate in shaping this
world.
WE DO
McClure,2002
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What new approach has recently made great
progress in associating disease phenotype with
genotype?
Genome Wide Association Studies
How are these done?
By brute force, assuming no knowledge of biology.
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Current Genome Wide Association Studies only
detect mutations that occur in greater that 1
of the human population.
Early successes are the genetic markers for
Crohns Disease and Macular Degeneration.
This was followed by many false positives for
genetic disease markers.
Lack of reproducibility of results.
NIH panel establishes collaborative guidelines.
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Under the NIH guidelines, in the last year risk
genes are identified for
gallstone disease
diabetes, Type 1 and 2
multiple sclerosis
bipolar disorder
colorectal cancer
obesity
celiac disease
breast cancer
HIV vulnerability
glaucoma
myocardial infarction
prostrate cancer
Rheumatoid arthritis
coronary artery disease
restless leg syndrome
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What do these types of findings mean for the
individual that has one of these markers?
Will they develop the disease?
Should you know your predisposition in advance?
What about your family history?
What is important in the expression of risk
genes?
ENVIRONMENT
What is most important about Genome Wide
Association Studies ?
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Bioethics is a Big Field
genome wide association studies, stem cell
research, cloning etc
Impact of Genome Projects
BIOETHICS
Animals, Plants Humans, Agriculture,
Industry. Ecosystem
Clinical Aspects Equal Access IssuesInformational
Access
Privacy Issues Ethnic populations Right to
Work Right to Healthcare
Genetic Discrimination Who defines perfect?
What is perfect? Variation as advantage.
Legal Status
McClure,2002
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Don't Fuck with 4 Billion Years of Evolution