Published: Thursday, January 3, 2019, 11:00 a.m. U.S. Eastern Time
Media Contact: Nalini Padmanabhan, 301.634.7346, press@ashg.org
Protections Remain Vital to Research Progress and Given Growing Use of Genetics
ROCKVILLE, Md. – The American Society of Human Genetics (ASHG) articulated its support for comprehensive protections against genetic discrimination worldwide, citing the need for fairness, access to care, and research data, in a new statement published today in The American Journal of Human Genetics (AJHG).
“As genetics experts, we know that the genome that each person inherits, including genetic variants that increase disease risk or are protective, is the product of chance inheritance of their parents’ genetic material,” the statement asserts. “As this biological process is elemental to being human and clearly beyond individual control, all persons should be free from discrimination or favoritism due to their individual ancestry or genetic status.”
In the United States, the Genetic Information Nondiscrimination Act (GINA), passed in 2008, prohibits discrimination based on a person’s genetic information in the workplace and health insurance contexts. GINA reassures individuals that undergoing clinical genetic testing or participating in a genetic research study will not harm their opportunities at work or their access to health insurance coverage. The Affordable Care Act, passed two years later, added significant health insurance protections by prohibiting discrimination based on a person’s having a disease, including those influenced by his or her genetics.
“We are in an era of unprecedented progress in genetics research and medicine, as well as growing use of and interest in genetic testing among the public,” said Lynn Jorde, PhD, Chair of ASHG’s Policy and Advocacy Advisory Group. “To maintain that pace of research and ensure continued public confidence in research study participation, it is essential to keep these protections in place and strong.”
ASHG also supports comprehensive protections against genetic discrimination in other countries, such as the Genetic Non-Discrimination Act passed in Canada in 2017. Broader than GINA, the Canadian law also prohibits genetic discrimination to the life, long-term care, and disability insurance markets – protections that the Society would also support in the United States.
The Society will continue to speak out in support of GINA and related provisions in other laws, and emphasizes the need for continued engagement with the public and the medical community about the importance of genetic non-discrimination.
“Far more people will be able to benefit from transformative new genetics knowledge and applications if they can dependably receive that care through health insurance, without fear of discrimination,” the statement notes.
This statement in AJHG is the second in a recently launched series of timely, concise ASHG perspectives on topics in research, health, and society, which intend to support debate within the genetics and genomics field and dialogue with the public. They address how scientific research informs issues and may assert Society positions or note important, related field activities.
Reference:
American Society of Human Genetics. (2019 Jan 3). ASHG 2019 Perspective: Genetic discrimination. The American Journal of Human Genetics. DOI: 10.1016/j.ajhg.2018.12.005.
About the American Society of Human Genetics (ASHG)
Founded in 1948, the American Society of Human Genetics is the primary professional membership organization for human genetics specialists worldwide. Its nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others with an interest in human genetics. The Society serves scientists, health professionals, and the public by providing forums to: (1) share research results through the ASHG Annual Meeting and in The American Journal of Human Genetics; (2) advance genetic research by advocating for research support; (3) educate current and future genetics professionals, health care providers, advocates, policymakers, educators, students, and the public about all aspects of human genetics; and (4) promote genetic services and support responsible social and scientific policies. For more information, visit: http://wptest.ashg.org.
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