NEW YORK (GenomeWeb News) – A national organization representing doctors is publicly supporting legislation, which Congress may consider in the next session, that would protect Americans from genetic discrimination from insurance companies and employers.
The doctors’ group, the American College of Physicians, wants the Genetic Information Nondiscrimination Act to become law. Yesterday the ACP issued a position paper detailing its reasons for supporting the law, which is floating in Congress right now in two variations. An incarnation of the bill in the Senate has been on a legislative hold for much of the past year and another that recently passed the House of Representatives bundled with a mental health bill is waiting in a conference.
The Personalized Medicine Coalition, which is comprised of R&D Universities and hospitals, clinical lab testing companies, patient advocacy groups, and government partners, has consistently backed the adoption of such a law.
PMC Director Edward Abrahams told GenomeWeb Daily News last week that, while the group has other pressing issues it is covering, GINA would be part of the “bedrock of efforts to introduce another paradigm” in medicine. His group’s goal is to promote policies which “remove barriers” in the way of the personalization of health care.
“The prohibition against using genetic information is important to safeguard the future of genomic research,” Abrahams said, in large part because “patients who enroll in clinical trials are less likely to share [genetic] information without that protection.
“There are documented, clear public anxieties about storing genetic information,” Abrahams added, and passing GINA would help alleviate that anxiety that is keeping some people from becoming involved in trials or even wanting to take predictive genetic testing.
GINA also has received wide support from legislators across party lines the several times it has been voted on in Congress, while organizations representing manufacturers, retailers, and the US Chamber of Commerce have aired their grievances about the legislation in public and in Washington.
These groups have claimed that the law as written would open new avenues for lawsuits, complicate employer liabilities, and would be blurry and unclear in states that already have genetic discrimination and privacy laws on their books.
The doctors’ group does not directly address the concerns of employers or health insurance companies, but sides with the GINA supporters on individual rights to insurance protections. The ACP agrees that insurance providers should not be able to use an individual's genetic information to deny or limit health coverage or establish eligibility, enrollment, or to set requirements. In addition, they said insurers should be prohibited from setting different premium rates based on an individual’s genetic information.
ACP also said it should be illegal for employers and insurers to require individuals or their families to undergo genetic testing and that written and informed consent should be mandatory for disclosure of genetic information.
Meanwhile, the insurance industry group American Health Insurance Plans has said it supports passage of a genetic discrimination law, but GINA is not quite the law it wants.
Speaking on AHIP’s behalf to a US House committee a year ago, William Corwin, the medical director of clinical policy at Harvard Pilgrim Health Care, said the law could get in the way of “appropriate health care decision-making.”
Corwin said the bill “could limit consumer access to life-saving treatments” because it would keep insurance companies from “requesting or requiring” an individual or a family member to undergo a genetic test, and that AHIP would prefer insurance companies to retain this right.
He added that there may be many “unforeseen advances” that could create circumstances where insurance companies would “need to request genetic tests to determine whether customized therapies or treatments are warranted.” Corwin also said GINA would stop health insurers from using genetic testing to identify “patients who may benefit from specific types of screening or disease management services.”
AHIP agrees with opponents of the bill who say the term “genetic information” may be used too vaguely. The definition written in the law “could apply to diseases, tests, and conditions that are completely unrelated to genetics,” Corwin said.
According to the ACP, which accepts the description of the term in the law, “genetic information” means information about an individual’s genetic tests, information about a family member’s genetic tests, or the manifestation of a disease or disorder in an individual’s family members. They also accept the bill’s explanation of a genetic test as analysis of DNA, RNA, chromosomes, proteins, or metabolites that detect genotypes, mutations, or chromosomal changes.