The Importance of Timely Access to Objective Genetic Counseling

At Genetic Support Foundation our work ensures that the people we serve have up-to-date and balanced information about genetics and health. We support individuals as they make informed and autonomous decisions about genetics and their health that are based on objective, balanced information that is free from commercial influence and other such biases.

The importance of informed and autonomous decision making in genetic healthcare spans all situations in which individuals and families may consider genetic information and testing during their lifetime. At GSF we provide genetic counseling for all ages, from parents of a new baby that may be suspected of having a genetic condition to grandparents who have questions about how genetics relates to not only their own health but the health of their children and grandchildren. We help all individuals and families sort through and understand the growing complexity of genetic testing options and the range of results such tests may yield.

Through genetic counseling, GSF helps people understand the potential meaning of genetic information in the context of their own lives, helping people navigate all options to arrive at the choices that are best for their unique individual situation. We help individuals explore how they may process the information genetic tests may identify, through balanced information about what life may be like for individuals and families who have the conditions that such testing may determine to be present. We also work to help people understand the limitations of genetic tests, including the possibility of false positive and false negative results, along with the emotions that may arise from uncertain results. For those who have genetic diagnoses that are confirmed, or highly likely to be present, we make sure to provide a breadth of knowledge, resources, and support and validation for every emotion that may arise during the diagnostic journey.

Not everyone makes the same decisions about whether or not to undergo any genetic test at any point in their lifetime, even when presented with the same information. For those who do elect testing, specific testing options, choices, and reactions vary tremendously. Decisions about genetic testing in all settings have always been deeply personal and complex. For individuals who are pregnant, and those who are considering pregnancy in the future, decisions about genetic testing and ramifications of the results are also further complicated by where a patient calls home.

The recent US Supreme Court decision to overturn Roe v. Wade giving individual states the right to determine the legality of abortion within their own jurisdictions has resulted in substantive changes to the landscape of reproductive healthcare and the meaning of prenatal genetic information for many across our country. The Supreme Court decision does not lessen or negate the importance of objective comprehensive genetic counseling in the reproductive setting but does make timely and ready access to it even more paramount.

Those living in states with early gestational limits for legal abortion may face increased pressure to make decisions about whether or not to continue a pregnancy based on incomplete, inaccurate, or misunderstood genetic information. Such scenarios may include individuals who receive an “increased probability” result from genetic screens but do not have ready access to balanced information about what the specific diagnosis could mean for their pregnancy or have the length of time needed to seek diagnostic tests that can provide more accurate and comprehensive information about whether the condition is truly present or not

Those living in states that specifically restrict abortion on the basis of a diagnosis of a genetic condition, may face unanticipated legal risks if their genetic test results signal the presence of, or an increased chance of a genetic condition in their pregnancy and they subsequently experience a miscarriage or have symptoms of a threatened miscarriage. Such individuals may have sought genetic testing to prepare for the birth and specific needs of a child with a genetic condition but despite the desire and intention to carry to term, be wrongly suspected of seeking an abortion if they seek medical treatment for miscarriage after learning the results.

All of us at Genetic Support Foundation are, and have been, fully committed to meeting the genetic counseling needs of patients at all touchpoints in their lives, including the reproductive setting. We also believe that it is imperative, from a reproductive and disability justice perspective, that people who are being presented with information about reproductive genetic testing are also provided balanced and accurate information about the medical and life outcomes and supports and services available for genetic conditions and disabilities that are being tested for. During this time of rapid change of the legal landscape of abortion in the United States, we at GSF remain committed to providing genetic counseling and support for all people who are navigating information about genetics and health.