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The Problems with Genetic Databases
(October 6, 2004) -
Imagine: You finally get offered a job at a major national daily
but flunk the final stage of the selection process because your
DNA indicates a propensity for burnout and low tolerance for stress.
The miracles of genetics are becoming personal and professional
snares.
Human genome sequencing was done at an extraordinary
speed, but only marked the beginning. A function or role has to
be assigned to each of the 30,000 genes. One preferred method
is undoubtedly the use of databases containing genetic (obtained
from a blood sample), morphometric (height, weight, etc.), social
and family information on a large number of individuals. Genetic
databases can already be used for linkage to identify the genes
responsible for specific functions or traits. For example, this
is how obesity is studied.
Johane Patenaude helped draft a report on the issue
for the Quebec government’s science and technology ethics
commission. "The public knows too little about the impact
of genetic databases on our society," she says, "but
then so do governments." In fact, genetic technology
is advancing so fast the public has a hard time keeping pace with
developments.
The Commission’s report particularly emphasizes
the discrimination this type of research could lead to. Employers,
insurers, and bankers might be tempted to use genetic information
to exclude individuals. But social segregation could also stem
from more sensitive issues such as mental illness. A region found
to have a higher rate of depression or schizophrenia could get
labelled. Local residents might end up ridiculed and industrial
development impaired on the basis of that information.
Western societies are trying to get a handle on
the situation, but sometimes their efforts seem futile given that,
for example, in Quebec alone the precise number of genetic databases
here remains unknown!
In the various countries concerned, one of the first
rules established was the "free and informed consent"
of individuals contributing to a genetic database. In Quebec this
consent is given with a signed form authorizing the use of confidential
information. Yet an informed decision requires accessible information
and the ability to foresee the consequences of one’s actions.
It’s hard to get people thinking that way in a world where
things happen at supersonic speed. Patenaude adds that current
standards fail to take social implications into account. In fact,
well-informed individuals who want to contribute to a genetic
database implicitly involve everyone with the same genetic heritage.
Personal consent therefore inevitably implicates the community.
Are individuals, governments and even researchers
really aware of the social issues involved in genetic databases?
It’s an example of the void between scientists and the public.
Solutions to help journalists give the public a better understanding
of the issues raised by science will be proposed at the plenary
session on Society’s Challenges from Emerging Science
today from 8:30 a to 9:45 a.m.
François D'Allaire
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