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Buttoning up their genes.

A Canadian report, issued by the office of the privacy commissioner on 20 May 1992, urges the federal government in Ottawa to set legal safeguards on the use, collection, and storage of information acquired through genetic testing. The report, "Genetic Testing and Privacy," recommends that the government:

* bar employers from using genetic

information to screen job applicants;

* prohibit companies from using

such information to determine

who should qualify for benefits or


* give constitutional protection to

privacy rights;

* outlaw genetic data banks for the

general public; and

* set up a task force to study the

extent of genetic testing that is

actually being done by the government

and the private sector (Montreal

Gazette, 21 May 1992).

In April 1992 Wisconsin passed a faint shadow of such a bill, prohibiting health insurance companies (but not life insurers), as well as counties, cities, villages, or school boards that provide health care from:

* requesting or requiring people to

obtain a genetic test;

* requiring anyone to reveal information

obtained from such tests;

* using such information to determine

health care benefits or insurance


As one-third of the people in Wisconsin receive their health-care coverage through companies that are self-insured (and hence fall under federal rather than state law), the protection offered by the Wisconsin legislation is considerably milder than, that proposed for Canada.

In addition, the Wisconsin law defines "genetic test" as "a test using deoxyribonucleic acid extracted from an individual's cells," even though most genetic testing does not utilize DNA. Genetic information gathered by other means does not therefore fall under the scope of the law. While the Canadian report does not explicitly define "genetic testing," the subtext indicates that it too is talking specifically about tests involving DNA. Unlike Wisconsin, though, the Canadian report leaves open the possibility of safeguarding genetic information no matter how it is generated.

It appears likely that the Wisconsin legislature will rectify this problem in its next session. It has, in any case, taken a first step toward assuring that its citizens' genes remain private.
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Author:Nelson, Hilde L.
Publication:The Hastings Center Report
Date:Jul 1, 1992
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