The Challenge of Biotechnology and Public Policy

2. Human Genetics

…(T)he new “post-mapping” genetic medicine promises: 1) genetic screening…; 2) knowledge of susceptibility status for specific and individualized drug targeting; and 3) genetic testing…

Current sequencing and mapping efforts in the human genome project foresee completion by the year 2003 or earlier. Creating much hope in the power of both sophisticated diagnostic and prognostic tools, and of informatic capabilities within medicine, the new “post-mapping” genetic medicine promises:

  1. genetic screening of asymptomatic populations for carrier status and prevention of onset of genetic conditions;
  2. knowledge of susceptibility status for specific and individualized drug targeting; and
  3. genetic testing for individual treatment, reproductive and lifestyle choices.

All this can occur prior to embryo implantation, or, during infancy, adolescence and adulthood. Until specific genetic markers are found for a given condition however, most genetic information in the post-mapping era will still come from the contribution of familial pedigrees, forcing the reconstruction of the biological “genetic” family, partially abandoned today in favor of consensual, social family forms.

Paradoxically, hindrances to such population data research for fear of possible misuse … undermine transparency and public oversight in that they drive informatics and genetic research into the private sector.

In short, expression of personal choices based on risk estimates will only become more certain and thus personally significant as basic genetic epidemiological research advances. Paradoxically, hindrances to such population data research for fear of possible misuse or misunderstanding while perceived to be protective of personal privacy and intimacy undermine transparency and public oversight in that they drive informatics and genetic research into the private sector. While the public has accepted bio/data banking as useful for criminal surveillance of morally reprehensible activities, no such acceptance exists for the creation and promotion of population data banking (be it genetic samples or information). It is precisely this lack of basic scientific data at the level of populations that will exacerbate current discrimination based on lack of knowledge.

Indeed, the use of inaccurate and thus unscientific information will have several untoward effects. Firstly, workplace and insurance screening based on actuarial data will be inaccurate. Lack of large population data bases will create an inability to prove such inaccuracy and thus, inadvertently foster illegitimate uses. Secondly, any decision to integrate genetic information into public health, planning, promotion and prevention programs at the level of the State will either be thwarted for fear of public opinion or again be unscientific and thus, unethical. Thirdly, these population database systems could, if promoted and used in a transparent way, not only be subject to public surveillance but also contain the very checks and balances needed to conform to modern privacy goals (legitimacy, authentification, transparency, finality,…). Thus, we need to prepare new ethical frameworks for genetic epidemiology that while inspired by individualistic ethics and sensitive to communitarian ethics (the concerns and cultural concepts of “collectivities”), address the urgent need for an appropriate methodology specific to population health.

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