As more companies similar to DNA.com sprout up on the world entrepreneurial landscape, (see Donate Your Genetic Material) the ethics of genetic research will come under intense scrutiny. As early as 1993, the US government developed guidelines to help companies and individuals deal with some of these issues. The following summary is from a US Task Force given the assignment of exploring the relationship between genetic information and the insurance industry.
One of the ironies in the current health care coverage crisis is that developing more accurate
biomedical information could make things worse rather than better.
In the current American health care system, information about an individual's risk of disease
plays a crucial role for many people in determining access to health care coverage. This link
between the likelihood of needing health care and the ability to obtain coverage for that care has
the unfortunate result that those most in need may have the greatest difficulty finding affordable
health care coverage. New advances in human genetics are transforming medicine by making
available increasing amounts of such information about risk.
Biomedical science and the delivery of health care are being reshaped by advances in our
understanding of human genetics. New insights into health and disease, new diagnostic and
prognostic tests and the possibility of new therapies reflect significant investments by the public
and by private business and are no longer limited to the uncommon disorders traditionally labeled
as "genetic diseases." Among the first products of genetic research is information useful in
predicting the likelihood that an individual will develop particular diseases, opening the door both
to preventive strategies that we would welcome, such as changes in diet and exercise patterns,
and to the unwelcome possibility of genetic discrimination.
Injecting information about genetic risks into the current health care system could result in
ever more refined risk rating by insurers and ever greater difficulty in finding affordable health
care coverage for large numbers of people. At a minimum, people could be discouraged from
obtaining genetic information that might be useful in disease prevention and early treatment or for
care planning and management because that same information could jeopardize their access to
health care coverage in general, or to treatment for a condition excluded from coverage because it
was "preexisting." Under other circumstances people might be compelled to provide genetic
information as a condition of obtaining affordable health care coverage. Genetic risk information
carries an additional, wider burden because information about an individual's genetic health risks
may also be information about the risks of children, parents, brothers, sisters, and other relatives.
One suggested approach--providing special protection for genetic information--is unlikely to
succeed. This special protection has been suggested because of the relevance of genetic
information to family members and its implications for reproductive choices, potential
discrimination and stigmatization. Genetic privacy ought to be vigorously protected; however,
other varieties of health related information are equally sensitive. Furthermore, as a practical
matter, genetic information is not segregated from other health related information in, for
example, medical records.
Special protection for genetic information is also difficult to enforce because of the "genetic
revolution" in medicine. Diseases increasingly are coming to be seen as having both genetic and
non-genetic components making it ever more difficult to classify health related information as
wholly genetic or non-genetic. The standard personal medical history, for example, is a rich
source of genetic information. Policies intended to protect genetic privacy will need to address
the privacy of health related information in general. If we want strict standards to safeguard
genetic information, then those same standards will have to extend to all health related
information. The Task Force considered these factors carefully.
Task Force Recommendations
In anticipation of fundamental reform in the financing and delivery of health care in the United
States, the Task Force on Genetic Information and Insurance offers the following
recommendations. The recommendations concern health care coverage and should not be applied
uncritically to other forms of insurance, such as life or disability income insurance.
- Information about past, present, or future health status, including genetic information, should
not be used to deny health care coverage or service to anyone.
- The U.S. health care system should ensure universal access to and participation by all in a
program of basic health services* that encompasses a continuum of service appropriate for the
healthy to the seriously ill.
- The program of basic health services should treat genetic services comparably to nongenetic
services and should encompass appropriate genetic counseling, testing, and treatment within a
program of primary, preventive, and specialty health care services for individuals and families with
genetic disorders and those at risk of genetic disease.
- The cost of health care coverage borne by individuals and families for the program of basic
health services should not be affected by information, including genetic information, about an
individual's past, present, or future health status.
- Participation in and access to the program of basic health services should not depend on
- Participation in and access to the program of basic health services should not be conditioned
on disclosure by individuals and families of information, including genetic information, about
past, present, or future health status.
- Until participation in a program of basic health services is universal, alternative means of
reducing the risk of genetic discrimination should be developed. As one step, health insurers
should consider a moratorium on the use of genetic tests in underwriting. In addition, insurers
could undertake vigorous educational efforts within the industry to improve the understanding of