National Society of Genetic Counselors.doc
Published on: Mar 3, 2016
Transcripts - National Society of Genetic Counselors.doc
Testimony presented at the
National Conference of Insurance Legislators
Proposed Genetic Discrimination Model Act
July 13, 2002
Katherine A. Schneider, MPH, CGC
President, National Society of Genetic Counselors
It is my pleasure to speak on behalf of the National Society of Genetic Counselors (NSGC),
which represents nearly 2,000 genetic counselors in an array of medical specialties and is the
leading voice, authority, and advocate for the genetic counseling profession. Genetic counselors
have been coordinating genetic tests for patients for over 25 years and have firsthand knowledge
about the complexities of genetic testing and what is required to ensure quality patient care.
We appreciate the opportunity to comment on the Genetic Discrimination Model Act sponsored
by Senator James Seward. The NSGC would like to raise the following points regarding the
1. Each of us has genetic alterations that predispose towards disease. Insurers who use
genetic susceptibility to determine eligibility will eventually find that no one qualifies for a
policy. The NSGC has the following concerns about using genetic risk factors to set life
• No one has control over the set of genes they were born with. There are few
dietary, environmental, or lifestyle modifications that can alter the probability of
developing a genetic condition.
• Very few genetic susceptibilities lead to definitive, clear-cut predictions about age
of onset, disease severity, or mortality.
• At the current time, only a few genetic risk factors can be identified. It seems
unfair to penalize people at-risk for “testable” conditions when each of us is
genetically predisposed towards disease.
• Genetics does not equal destiny (genotype does not equal phenotype). Most
genetic diseases have reduced penetrance (not everyone with the genotype will go
on to develop the disease) and variable expressivity (some people will be mildly
affected and others will be severely affected). Thus, it is possible that a person
could inherit a gene mutation but not ever develop serious problems related to the
genetic disease. Overall disease risk also depends on gene-gene interactions and
2. Some people choose not to undergo genetic testing. One of the main tenets of genetic
counseling is that people have the right to make their own informed decisions about testing,
free of coercion from third-parties. It is extremely important to maintain this level of
individual choice in regards to testing. The NSGC suggests that this bill include a statement
that in no circumstances will potential policy-holders be coerced into having a genetic test.
3. Protecting the privacy of genetic information is an important feature of this act. This
act states that genetic test results cannot be obtained or used to set policies under $100,000.
However, given that the vast majority of policies are greater than $100,000 this act would
actually provide very little protection. The NSGC suggests raising this premium to at least
$200,000 so that it becomes meaningful legislation.
4. It is important to involve genetics experts when determining which conditions are
considered “catastrophic.” In this model act, a “catastrophic” genetic susceptibility is
defined as one that has an 80% chance of causing disease and a 50% chance of causing
disease-related death. However, it is not clear how the list of catastrophic diseases will be
compiled. Most genetic conditions are comprised of ranges of risk, rather than specific
morbidity or mortality rates. In addition, these estimates are likely to change as our
collective knowledge of the disorder grows and as medical technologies become available.
Therefore, it is extremely important that genetics professionals are involved in defining the
catastrophic conditions. Genetic counselors in the NSGC have expertise in a variety of
disorders, from childhood metabolic disorders to hereditary cancer syndromes and are
available to assist in these efforts.
5. Many genetic tests are complex to perform and complex to interpret. Different
laboratories may offer different types of genetic tests, even for the same genetic condition.
The “standard of care” in genetic counseling and testing is evolving rapidly as new tests are
developed. In general, it takes several years to collect sufficient clinical data about genotype-
phenotype correlations in order to understand the significance of genetic test results. This is
particularly true for rare genetic conditions. In addition, genetic test results may be uncertain
or uninterpretable. For this reason, it is important for patients and families to have access to
health care providers who have expertise in genetics.
6. Studies have shown that patients and families are very concerned about possible genetic
discrimination. This fear keeps some people from pursuing testing, and in certain cases,
genetic risk assessment, despite the potential life-saving value of this information. The fear
of genetic discrimination may also deter individuals from participating in medical research,
thereby hindering potentially life-saving advances in health care.
7. The proposed model act addressing the use of genetic information in setting life
insurance policies is both important and timely. Genetic counseling and testing are
becoming more and more common. Genetic testing is no longer confined to rare diseases of
childhood, but also includes common diseases, such as cancer, heart disease, and
neurological conditions. Advances in medical technology will further enhance life
expectancies for individuals predisposed to genetic disease. In the future, it is likely that gene
tests will be a routine part of medicine. This makes it even more vitally important to pass
anti-discrimination legislation now. The benefits of The Human Genome Project will only be
realized if the appropriate safeguards are in place. Over 40 states have now enacted some
type of protective legislation on behalf of individuals who have undergone genetic testing in
the arenas of health insurance and employment.
In closing, this model act is an important step in the right direction and I appreciate the
opportunity to comment on it. I would be happy to continue the discussion about any of these
points if there are questions. Thank you for your time.
Katherine A. Schneider, MPH, CGC National Society of Genetic Counselors
President, NSGC 233 Canterbury Drive
Dana-Farber Cancer Institute Wallingford, PA 19086-6617
44 Binney Street Phone: 610-872-7608
Boston, MA 02115 Fax: 610-872-1192
Phone: 617-632-3480 Web: www.nsgc.org