After more than four months of discussions, the National Institutes of Health and the family of Henrietta Lacks have reached a mutual agreement that will serve to both advance medical research and protect Lacks’ descendants.
In 1951, Lacks died of cervical cancer at Johns Hopkins Hospital in Baltimore. Before her death, doctors removed some of her tumor cells. And something amazing happened. Her cells had a property not seen before: They could grow in a lab. Those cells, now called HeLa cell, were everlasting.
“We have agreed that NIH-supported researchers will deposit any DNA sequences derived from HeLa cells into NIH’s dbGAP database, and have established a process through which researchers can request controlled access to that data. Such requests will be reviewed by a working group consisting of physicians, scientists, a bioethicist and two members of the Lacks family,” said Francis Collins, MD, PhD, NIH director.
The HeLa cells have been the subject of more than 74,000 studies; they have served as the foundation for developing vaccines and provided insights into cell biology, in vitro fertilization and cancer.
Know someone who is doing extraordinary things to improve public health in your community? Nominate them (before Friday, August 9) as a Champion of Change for Prevention and Public Health.
The champion’s work may involve:
- Supporting community and clinical prevention efforts to address chronic disease, increase education and outreach, and integrate primary and behavioral health;
- Creating healthy and safe communities by promoting healthier schools, homes and workplaces that make the healthy choice the easy choice;
- Working to address health disparities and empower all Americans to make healthy choices by addressing health concerns that disproportionately affect certain populations;
- Strengthening public health infrastructure and improving public health’s capacity to detect and control disease and other threats;
- Increasing the uptake of important preventive services; and
- Promoting tobacco prevention.
“We know that efforts to promote the public’s health and prioritize prevention happen in America’s towns and cities, in schools and parks, in churches and community centers. Every day, local leaders across America’s communities are stepping up in big ways to make sure all Americans have the opportunity to live a healthy life,” said Paul Dioguardi, director, Office of Intergovernmental and External Affairs, U.S. Department of Health and Human Services, in a communication.
Winners will be invited to the White House in September to celebrate their accomplishments and showcase their actions to support healthier communities.
If you have any questions, email ExternalAffairs@hhs.gov.
Dear Research Advocate:
Myth #1: Congress doesn’t pay attention during the August recess. Not true! Many town hall meetings are planned. Since the debt ceiling and appropriations negotiations are coming up in September, the August recess is actually a very important time for advocacy. Use this month to drive the point home that medical research should not be subjected to budget cuts by attending a town hall meeting, meeting with district staff and participating in our social media campaign, #curesnotcuts. Click here for sample messages, or draw from a recent op-ed penned by The Honorable John Edward Porter, Research!America chair. The op-ed ran in several McClatchy-Tribune newspapers across the country last weekend. In it, he highlights the dangers that indiscriminate budget cuts pose to our medical and health research ecosystem.
Myth #2: It makes no difference when scientists speak out. On the contrary, one of the most effective strategies for promoting and protecting research is public engagement by scientists. It may seem like a waste of time or an unjustifiable obligation, but if scientists don’t speak up about their work, the funding that allows that work may evaporate. In a recent entry on his website, David Eagleman, a PhD researcher who recently received an award from the Society for Neuroscience, makes the case that the benefits (such as inspiring critical thinkers, stemming the flow of bad information, informing public policy and more) clearly outweigh the cost of time to engage in outreach and advocacy. For those ready to engage, some important points and valuable tips on how to communicate clearly and effectively were highlighted in yesterday’s Nature blog. Research!America Board member and AAAS CEO Alan Leshner is among the experts quoted. Continue reading →