Johns Hopkins University’s Genetics and Public Policy Center has launched an educational effort aimed at informing the public of how their genetic data can and cannot be used under the recently enacted Genetic Information Nondiscrimination Act.
As part of its so-called “Project GINA,” the GPPC plans “to disseminate information” about the legislation to healthcare stakeholders and the general public, GPPC Law and Policy Director Susannah Baruch told Pharmacogenomics Reporter last week.
As part of its plan, the GPPC will launch a web site describing and explaining the federal law that bars health insurers and employers from discriminating based on genetic data. The website, slated to launch in September, will outline what protections are provided under the law, contain a FAQ page, and will provide updates describing how federal and state regulators are implementing the law.
Until the launch of the site, however, GPPC is providing information on GINA under the “What’s Happening” heading on its homepage.
Since GINA became law in May, GPPC Director Kathy Hudson has said that the center intends to spearhead a “major education campaign” to inform “doctors and patients … of these new protections, so that fear of discrimination never again stands in the way of a decision to take a genetic test that could save a life."
Ahead of the website’s launch, GPPC has made preliminary efforts to educate the public and stakeholders about the law through peer-reviewed publications, webinars, and fact sheets.
GPPC recently hosted a series of webinars with the Bureau of National Affairs and has disseminated informational fact sheets describing GINA’s provisions.
Additionally, Hudson co-authored an article in June in the New England Journal of Medicine with Francis Collins, former director of the National Human Genome Research Institute, and M.K. Holohan, an NHGRI senior health-policy analyst, asserting that “it will take much more than sound regulations to ensure that we reap the full benefits” of GINA [see PGx Reporter 07-02-08].
In the NEJM article, the authors acknowledged that the decentralized nature of the US healthcare delivery system makes such educational efforts a “daunting” task.
“The challenge is to educate all stakeholders, and to make sure that fear of discrimination never again stands in the way of a decision to take a critical genetic test,” Baruch said.
Although GINA made it illegal under federal law for insurers and employers to use a person’s genetic information to make reimbursement and employment decisions, the law does not provide blanket protection against discrimination using any and all kinds of genetic information. As a result, legislative experts have pointed out certain finer points in the law that the general public should be aware of.
For instance, GINA does not override existing state laws covering genetic nondiscrimination by employers and health insurers; it does not protect against discrimination based on genetic information derived from certain pharmacogenomic diagnostic tests for pre-existing diseases; and it limits an individual’s ability to sue employers or health insurers for allegedly misusing genetic information.
GPPC said it plans to distribute these and other points in its Project GINA effort. To that end, the organization said it will work with Jeremy Gruber of the National Workrights Institute and Karen Pollitz of Georgetown Health Policy Institute to specifically target information to clinicians, health insurers, employers, researchers, ethics boards, and state legislatures. The center will also assist agencies charged with implementing provisions for GINA, Baruch noted.
Project GINA is particularly timely since a recent survey by Cogent Research revealed that while 91 percent of Americans surveyed would take a genetic test, approximately three-fourths did not know how their genetic data was protected under the law [see PGx Reporter 08-13-2008].