Download Genetic Justice

“Genetic Justice: Where to Begin?”
Colin Farrelly
Dept. of Political Science
University of Waterloo
Genetic Revolution
• 1953 James Watson and Francis Crick discover structure
of DNA...
• 2003: Human Genome Project completed
• Dec. 2005: Cancer Genome Atlas
• …number (and accuracy) of genetic tests is rapidly
increasing…over 1000 tests
• -Tests: PKU, Huntington’s, CF, Tay Sachs, Sickle-Cell…
• -Goal of $1000 human genome: personalize medical
treatment
• -Gene Therapy: normal or desirable genes are inserted into
the cells.
Genetic Justice
Pre-revolutionary society: genetic lottery the result
of brute luck.
Examples: HD mutation, FMR1 mutation (Fragile X
syndrome), faulty BRCA genes (breast cancer).
Post-revolutionary society: genetic lottery
influenced by basic structure (decisions about
genetic testing, therapies and enhancements…)
now the question of what constitutes a
just distribution of genetic endowments arises.
Expanding the domain of justice
• “We now stand on the threshold of a great expansion of the
domain of the social. If it becomes within our power to
prevent what we now regard as the misfortune of a sickly
constitution (a weak immune system) or the catastrophe
(the natural disaster) of a degenerative disease such as
Alzheimer’s dementia, then we may no longer be able to
regard it as a misfortune. Instead, we may come to view
the person who suffers these disabilities as a victim of
injustice. As our powers increase, the territory of the
natural is annexed to the social realm, and the new-won
territory is colonized by ideas of justice.”
Allen Buchanan, Dan Brock,
Normal Daniels and Daniel Wikler
From Chance to Choice.
Where to Begin?
• Why not just apply existing theories of justice?
(the “add genetics” and stir approach)
• Libertarian: “Liberty upsets patterns” (Nozick)
• A just distribution of genetic endowments =
procreative decisions of parents and market
regulation of biotechnology.
• Sufficiency/ Equal Opportunity: all should have a
genetic decent minimum (From Chance to
Choice)
Where to Begin?….
What is Political Theory?
• John Dunn: purpose of political theory is to
diagnose practical predicaments and to show us
how best to confront them. (3 skills)
• 1*. Ascertaining how we got to where we are
and understanding why things are this way.
2. Deliberating about the kind of world we want to have.
3. Judging how far, and through what actions, and at what
risk, we can realistically hope to move this world as it now
stands towards the way we might excusably wish it to be.
[Dunn: ‘Reconceiving the Content and Character of Modern Political
Community’ ]
Sickle Cell Disease
• inherited disorder
• can cause serious
infections,
damage to body organs
Malaria came to West Africa 4000
years ago
The Brain…
Hobbes: The State of
Nature
Why do we develop cancer?
• 2 kinds of answers:
• Answer #1: focus on
proximate causal
mechanisms: genes and
environment
• Answer #2: “big
picture” perspective of
our evolutionary history.
Our intrinsic Vulnerability
• …the blind process through which we and other species
have emerged carries with it inevitable limitations,
compromises and trade-offs. The reality is that for
accidental or biologically sound, adaptive reasons, we have
historically programmed fallibility. Covert tumours arise
constantly, reflecting our intrinsic vulnerability, and each
and every one of us harbours mutant clones with malignant
potential.
• Mel Greave's "Darwinian medicine: a case for cancer"
(Nature Reviews Cancer, March 2007)
Important Questions…
• What constitutes normal species functioning?… is this
therapy/enhancement? (NO!)
• - the likelihood that the harms of non-intervention
will be realised; - the severity of these harms
• - the likelihood that intervention will have the
desired results; - the costs of intervention and the
magnitude of benefits (if realised)
• - the safety, efficacy and costs of other forms of
intervention (environmental intervention), etc…
• these empirical considerations are bracketed by “firstbest” conceptualism.
Deliberative Democracy
• The standard [bioethics] model, and to an even greater
extent the rhetoric of ethics, often imply that there is only
one right solution to each policy making decision, and that
it is possible to find this solution, and to know that it is the
right decision…. In contrast, theorising about deliberative
democracy proceeds from the assumption that whereas
there might be a right solution, it is often impossible to
find this solution or to know that it is the right solution in
any absolute sense. The best we can do is to outline the
area of acceptable policies, and then choose a policy within
this area through a deliberative, democratic process.
(Soren Holm, editorial, Journal of Medical Ethics, 2005)