A few years ago, a team from Group Health Research Institute (GHRI) printed this Louis Pasteur quote on T-shirts for the Group Health Annual Membership Meeting:
“Science knows no country; knowledge belongs to humanity.”
That’s how proud we felt to be doing health research that helps people everywhere, not just a privileged few. After last month’s U.S. Supreme Court ruling to stop patenting of human genes, that message seems more salient than ever.
As you’ve probably heard, the court decided “a naturally occurring DNA segment is a product of nature and not patent-eligible merely because it has been isolated.” Many people at public-interest research organizations like GHRI, universities, and the National Institutes of Health (NIH) cheered this decision. It’s good for health science and the patients we serve. Letting Myriad Genetics patent information from the human genome gave the company a monopoly on testing for mutations that raise the risk of certain cancers, including the BRCA genes. This created a windfall for Myriad while inflating the tests’ cost beyond most people’s reach. It also encouraged “patent trolling” by unscrupulous enterprises, driving up prices without necessarily producing any public good.
According to NIH Director Francis Collins, MD, PhD, the high court’s decision will make it easier for many more researchers to develop new tests and therapies tailored to individuals’ unique genetic makeup. For GHRI, the ruling could benefit collaborations such as the federally funded Electronic Medical Records and Genomics (eMERGE) Network, which uses genetic and medical record information from patients around the country (including at Group Health) to create a research database for large-scale, high-throughput genetic research. This information is “de-identified”—stripped of data that could be used to identify individuals.
In addition to projects like eMERGE, GHRI’s commitment to openly sharing scientific data applies to many research areas. Through nationwide collaborations, we’re part of other large data repositories, including:
Group Health researchers work with our members and care-delivery system to ensure an ethical balance between keeping health data private enough to protect patients’ rights, but public enough to use the data for common good. We’ve learned that many Group Health members value data collection for research and quality improvement as a public good. As part of our work with eMERGE—and through relationships with Group Health’s member-governance system—we’ve asked our research participants for input into our policies and practices for releasing data. They told us they trust Group Health and researchers and want their research data to serve the public interest. They hesitate about releasing their data only if used for private/proprietary gain—not common good.
We earn patients’ trust by working with our collaborators inside and outside Group Health to protect data privacy. For all GHRI research, authorization and physical access to patient information is given only to people who need it. Paper and electronic records are under strict protection. All our employees get mandatory training in federal laws governing the privacy of health records. Specific policies dictate how patient information is used.
In return for Group Health members’ trust, GHRI aims to “give back” by broadly sharing research results that can improve health and health care. Through journal articles, scientific meetings, traditional media, social media, and more, we spread knowledge made possible through our study subjects’ generous willingness to participate. It is our standard to also share our findings with participants. Group Health members’ willingness to take part in our research is key to our successes and a cherished treasure for GHRI.
Safeguarding individual privacy while openly sharing scientific data and results requires ongoing vigilance and support. But as the recent Supreme Court decision on DNA research attests, fostering an environment of vigorous discovery requires an open stance to sharing scientific information. Group Health researchers are working in partnership with patients and the care-delivery system, striking a balance that will lead to more discoveries that will save more lives.
—Eric B. Larson, MD, MPH