“Genetic Justice: Where to Begin?”

Colin FarrellyDept. of Political ScienceUniversity 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 WiklerFrom 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 “first-best” 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)