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October 24, 2003
New genetic legislation
Jews may benefit from new anti-discrimination law.
PAT JOHNSON SPECIAL TO THE JEWISH BULLETIN
The United States Senate has passed legislation banning genetic
discrimination. The issue has become central as new technologies
have emerged that can detect predispositions for a wide range of
diseases or medical conditions, including cancer, Huntington's Disease
and sickle-cell anemia.
The medical advances that have permitted testing for genetic predispositions
are no longer merely of concern from a medical standpoint. Because
of the way the tests have been used by some employers, insurers
and health providers, the American Civil Liberties Union (ACLU)
and others have raised alarms about the potential for discrimination.
Critics have expressed concerns over such tests from both scientific
and ethical perspectives. On the scientific side, tests that claim
to be able to pinpoint a likelihood of developing breast cancer,
for example, are able to identify predisposition to the disease,
but cannot predict whether an individual will develop the disease,
according to information compiled by the ACLU. In the case of other
medical conditions, new technologies can likewise determine predisposition
but have no way of predicting whether an individual will ever develop
symptoms and, even if they do, when the symptoms will emerge or
what degree of severity they will manifest.
There is a flip-side to the new technologies as well. Though tests
have pinpointed genetic mutations associated with such things as
breast cancer, the ACLU report says 85 to 90 per cent of women who
develop breast cancer do not indicate a genetic predisposition,
which suggests a negative genetic test is far from a clean bill
of health. Though this does not call into question the legitimacy
of genetic testing, it does indicate extreme limitations to predict
the likelihood of such diseases as breast cancer.
Despite the limitations of the tests, some employers use genetic
testing before hiring employees, in order to predict potential for
expensive illnesses that could affect productivity and future insurance
rates. The practice was forbidden in the American public service
several years ago but, until now, no comparable regulations governed
the private sector. Similarly, indications of genetic predisposition
could result in the inability of individuals to access health insurance
or to gain coverage from the private health-care providers who manage
most Americans' medical care.
The issue is of particular concerns to some racial groups who are
known to have higher incidents of genetic predisposition for various
conditions. African-Americans, according to the ACLU, have statistical
predispositions to sickle-cell anemia, while some Ashkenazi Jews
seem to have a predisposition to breast cancer – though the
Ashkenazi-cancer connection has not been sufficiently proven.
These technologies can have a profoundly desirable impact, if used
appropriately. Individuals with predispositions can, in some cases,
reduce their likelihood of developing symptoms of a disease through
lifestyle changes.
In the Jewish community, particular attention has been devoted to
diseases such as Tay-Sachs, a progressive condition of the neurological
system that can cause blindness, deafness, loss of co-ordination
and death in infancy. The enzyme deficiency that indicates predisposition
apparently exists in one in 25 Ashkenazi Jews.
Niemann-Pick Disease, predisposition for which has been identified
among one in 90 Ashkenazim, is a neurodegenerative disorder that
affects the liver and spleen and can progress to loss of brain function.
A range of other diseases can be detected through specific screening
and, though not all diseases have cures, there may be cases where
carriers will face choices over whether to have children, particularly
if both parents indicate predispositions.
As a workplace issue, genetic testing has increased enormously as
the technologies have emerged. A 1982 study by the United States
government found genetic testing in the workplace in 1.6 per cent
of companies. A similar study six years ago by the American Management
Association found the practice in between six and 10 per cent of
employers. Moreover, 22 per cent of people in a survey of 1,000
individuals with genetic predispositions said they had experienced
some form of discrimination based on their risk status.
On top of the potential for discrimination, the American and Canadian
governments have not regulated the tests and the accuracy of such
tests is often unproven.
Dr. Michael Mehta, a University of Saskatchewan sociologist with
specialty in bioethics, has warned that privacy is seriously at
risk without the intervention of governments to set standards for
the use (and abuse) of these new "nanotechnologies." Nanotechnologies
(etymologically, the "science of the small" focuses on
dealing with individual atoms and molecules). Mehta clearly equates
the potential for the new technologies to be misused in the way
science provided a foundation for the eugenics movements of the
last century. He calls for a major public discussion of the issue,
including codes of conduct for industry and government oversight
of the emerging nanotechnologies.
At present, Canada has no regulation of nanotechnologies.
George Radwanski, who recently and publicly left his position as
privacy commissioner for Canada, spoke on the emerging issue of
genetic privacy in a presentation to the International Bioethics
Committee of UNESCO (the United Nations Education, Scientific and
Cultural Organization) in 2001 in Paris. Among his recommendations
is the "right not to know," which suggests that no individual
should be forced to undergo genetic testing without their informed
consent. In addition to employment issues, Radwanski warned, information
could be used to allocate educational funds, determine who gets
a mortgage and to stream children into particular courses of endeavor
based on assumptions about future health that may have no relation
to reality.
Among discussions in the academic world, some contributors are raising
alarming allusions to Aldous Huxley and George Orwell, whose dystopic
fictions some contemporary critics see as truer than ever. Federal
officials have genetic issues in their sights now, specifically
as they relate to reproductive technologies, cloning and human tissue
uses. The uses of genetic predisposition testing is only now emerging
as a bioethical issue, and it holds particular interest and implications
for the Jewish community.
Pat Johnson is a native Vancouverite, a journalist and
commentator.
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