Effect of the human genome initiative on women's rights and reproductive decisions
by
Charo RA.
School of Law,
University of Wisconsin, Madison 53705.
Fetal Diagn Ther. 1993 Apr;8 Suppl 1:148-59.

ABSTRACT

The Human Genome Project is likely to exacerbate historic tendencies to balance demographic concerns on the backs of women. This kind of policy is unjustified in law and violates classic theories of justice. Reproductive decision making, which affects women personally, is not the legitimate domain of community concern or manipulation.

PIP: The amount of information we will have about the likely birth outcomes of our children will be greatly enhanced by the results of the Human Genome Initiative. With this knowledge will come the possibility that women may be held accountable by the public, their families, and any impaired children they may have for the size, health and demographic makeup of future generations. Women will be subjected to 2 conflicting pressures: 1) to avoid conceiving or bearing affected children, and 2) the anti abortion movement's attempts to restrict women's rights to decide to avoid these births. While the public undoubtedly has a significant economic interest in the size and makeup of a population, the social policies followed to foster this public interest have been applied to women rather than to the population at large. Thus, in China, for example, whereas education is the strongest single correlate with reduced family size, the population policy emphasizes a 1=child per family goal rather than women's education. Likewise in Romania, the state's pronatalist policy was carried out by forcing women to continue unwanted pregnancies. Eugenics is not a stranger in the US, which had sterilization laws in 30 states. Today, US lawmakers are drafting financial incentives and disincentives to pressure women on welfare or drugs to limit their family size. Courts hear cases of forced sterilizations or prosecution of pregnant drug abusers under the guise of child protection strategies. Eugenics restrict the liberty of fertile women in order to further community interests and the interest of future generations. The right to procreate is widely held as implied by the US constitution, but the Supreme Court has not explicitly considered whether such a right exists. The Court has, however, both upheld and repudiated the forced sterilization of the mentally retarded and has rejected the sterilization of repeat felons. The state's interests in reducing the number of genetically impaired individuals on economic grounds are not compelling because the costs for managing individuals with impairments acquired after birth or even of those who are illiterate are far greater than the costs associated with individuals born with a genetic deficiency such as Down syndrome. Voluntary screening, however, will enhance the personal liberty of parents and serve governmental objectives. Mandatory secondary school education about basic genetics and genetic screening also will increase the personal liberty of future decision makers. If the right to abortion is overturned, the seemingly endless list of detectable fetal defects pinpointed by the Human Genome Initiative will have state governments scrambling to define what constitutes a legal abortion. Intergenerational justice requires only that we leave our children no worse off than we were.

Biohappiness
Genospirituality
Julian Savulescu
Private eugenics
'Designer babies'
Procreative liberty
Personal genomics
Genetic enhancement
Ashkenazi intelligence
Eugenics before Galton
Scandanavian eugenics
The literature of eugenics
Human self-domestication
Germline genetic engineering
Preimplantation genetic diagnosis
Beneficence, determinism and justice
A life without pain? Hedonists take note'
'The Principle of Procreative Beneficence'

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