The potential for preventive medicine to lead to more equitable health outcomes exists with the inclusion of genetic testing in medicine. Because of the medical implications of genetic testing for hereditary cancer syndromes and the financial cost attached to recommended management, ensuring equitable access to cancer screening and prevention must be made a priority. For patients with Hereditary Breast and Ovarian Cancer (HBOC) syndrome, the benefits of early detection and prevention are clear, significant, and create the opportunity to provide more equitable, personalized, preventive healthcare. Thus, for genetics providers who offer testing access for their patients, it is important to reflect on the ethical responsibility of advocating for access to appropriate management. Cancer genetic counselors can advocate for health equity by providing thorough pre-test genetic counseling, collaborating with other disciplines to coordinate care, lobbying state, and national representatives to pass legislation promoting health equity, and developing a management clinic that helps to ensure follow-up. Equitable access to and benefit from hereditary cancer risk management must be achieved in the pursuit of personalized preventive medicine.
Preimplantation genetic testing for monogenic disorders (PGT‐M) was originally developed to identify embryos affected with serious childhood‐onset disorders, but its use has recently broadened. Guidance on the use of PGT‐M in the United States (U.S.) is currently limited, with no formal laws or guidelines established on its use. The goals of this study were to determine for which types of conditions U.S. laboratories currently do not offer PGT‐M, to explore ethical considerations U.S. laboratory genetic counselors (GCs) take into consideration when deciding to accept or reject a PGT‐M request, and to explore whether U.S. laboratory GCs believe PGT‐M should be offered for conditions with reduced penetrance or for variants of uncertain significance (VUS). Qualitative analysis of semi‐structured interviews with nine genetic counselors, from five different PGT‐M laboratories, was conducted. Participants were required to be GCs working at a PGT‐M laboratory in the U.S. and either actively counsel patients on PGT‐M or determine a patient's eligibility for PGT‐M. Two participants reported their separate laboratories have no limitations for allowable PGT‐M testing, while the other seven participants representing three other laboratories reported having limitations. The main ethical consideration GCs reported considering when deciding to accept or reject a PGT‐M request was patient autonomy, with a focus on the patient understanding risks of the testing. All participants reported believing PGT‐M should be allowable for conditions with reduced penetrance and VUS, with all participants stating their respective laboratories allow for this currently. However, all participants reported a lack of sufficient guidelines and that having guidelines from a professional organization would be beneficial to their practice. In conclusion, lack of current guidelines in the United States has created discrepancies between PGT‐M laboratories. PGT‐M laboratory GCs support the use of PGT‐M for conditions with reduced penetrance and VUS with informed consent. The need for guidelines is supported.
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