Ensuring privacy in genetic testing
By Sujatha Byravan and Jane Matlaw
Boston Globe
November 2, 2005

We Tend to take privacy for granted. We take it as a given that the
conversations we have in our homes, what we view on television, our
phone numbers, and other personal information will remain private
unless we choose to share that information with others. Few of us
realize that an important privacy protection is in jeopardy right here
in Massachusetts.

To keep pace with recent scientific advances, the right to privacy
must protect the confidentiality of our genetic makeup. Otherwise we
would have no control over who has access to information that goes to
the very heart of who we are, with potentially serious consequences.

Genetic testing results can help doctors and their patients anticipate
medical conditions that could arise and help them take steps to reduce
the risk. However, the benefit of obtaining genetic tests in certain
situations (for example, in the case of a woman with a strong family
history of breast cancer) could be offset if those same test results
are turned against the individual. What happens when genetic testing
results are used to determine whether someone can obtain insurance or
whether an employer will hire that individual? Or when the mere
prospect of such misuse of genetic information prevents someone from
getting genetic testing in the first place?

In 2000, the Massachusetts Legislature passed legislation safeguarding
the confidentiality of genetic testing results and protecting against
the misuse of genetic information. The legislation prohibits requiring
genetic tests as a condition of employment or insurance, bans
disclosure of genetic test results without consent, and protects
against discrimination in employment and insurance based on genetic
testing results.

Unfortunately, on Jan. 1, 2006, several critical provisions of this
law are set to expire -- unless the Legislature chooses to act before
then. The provisions set to expire protect against discrimination in
life insurance coverage, disability insurance, and long-term care
insurance. Without these protections on the books, insurers could
require all applicants for these types of insurance to undergo genetic
testing and could use the results to deny coverage or set higher
rates, whether or not doing so is statistically sound in a particular
instance.

The loss of privacy and the potential for discrimination is a concern
for all Massachusetts residents, but especially for members of ethnic
groups with a greater frequency of particular genetically influenced
diseases. For example, many Jewish women of Eastern European heritage
are carriers of genetic variations that have been linked to an
increased risk of developing breast as well as ovarian cancer. Women
in this population with additional risk factors are often urged by
medical professionals to undergo genetic testing to determine whether
they carry these genetic variations.

Without the protections afforded under the legislation enacted in
2000, people of all racial and ethnic backgrounds who undergo genetic
testing would face potential discrimination in employment and in
insurance coverage. Losing any of these protections -- including the
ones that are scheduled to ''sunset" on Jan. 1 -- would be a blow to
many Massachusetts residents. Those who underwent genetic testing
believing that the privacy of the test results was legally protected
would be particularly vulnerable. And those individuals who will one
day need to decide whether to take genetic tests would need to weigh
that decision against the possibility that they may not be able to
obtain life, disability, or long-term care insurance if they go ahead
with testing.

The real-life story of ''Debbie" illustrates the importance of genetic
privacy. Debbie is a 51-year-old woman with a family history of breast
and ovarian cancer. She was advised by a genetic counselor to consider
genetic testing in order to guide her medical decision-making about
preventative surgery. However, Debbie knows that parts of the genetic
privacy legislation are about to sunset. For now, she is delaying
important decisions regarding genetic testing and potential medical
intervention until our legislators resolve this issue.

We urge the Legislature to protect the privacy of all Massachusetts
residents by taking swift action to keep these important protections
on the books before time runs out.

Sujatha Byravan is president of the Council for Responsible Genetics
in Cambridge. Jane Matlaw is chair of the Jewish Women's Coalition on
Breast Cancer and a vice president of the Jewish Community Relations
Council of Greater Boston.