Big Data in Health Care: Building an Ethics Framework for Biomedical Data Modeling
Big data in health care is growing, and it is coming from an increasing number of sources, including electronic health records, patient monitors and physical activity trackers, and smartphone applications. How accurate is this data? What biases does it contain? How do errors and biases ultimately affect patients?
Health data models have the potential to exacerbate current health and health care disparities and create new ones. A new Hastings Center project will develop an ethics framework for scientists to use to help anticipate and prevent these problems. Diane M. Korngiebel is leading the project, which is funded by the National Human Genome Research Institute of the National Institutes of Health and the NIH Office of the Director.
“For ethical and transparent health data models, we have to think about what data are used, why, and how, and who’s involved in decision-making throughout,” says Korngiebel.
In the Media: Assuring that a Covid Vaccine is Safe, Trustworthy, and Affordable
Hastings Center research scholar Michael Gusmano answered questions about scientific, political, and ethical issues around the development of a Covid vaccine in a video interview with the Highlands Current in New York. “The speed and global scale of vaccine development is breathtaking,” he said. But he warned that approval of a vaccine should not be rushed without “science and numbers” behind it to assure that it is safe and trustworthy. Given the global anti-vaccine movement, “it’s crucial to make sure that the process has integrity.” Gusmano also stressed the importance of making sure that the vaccine is affordable to all. “In the U.S., one of the biggest barriers to people receiving timely health care is money,” he said. Watch the interview.
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A New Look for Hastings
You may have noticed that The Hastings Center has updated our look and refreshed our website. After 50 years, it was time!
This refreshed site features the new logo and visual identity for the Center. The clean, evenly spaced design of the result represents the deliberate, attentive, and thoughtful attitude cultivated at the Center. Fine lines and small details make up the logo, emphasizing the analytic nature of the Center. The lines in the logo gather from a variety of areas, converging in the center. This is representative of the diverse groups of people and comprehensive ideas which come together.
We’ve also made some changes – although not too many – to the user experience of the site. The homepage highlights our publications, our blog, and our briefings, in addition to the latest news. These are the most popular areas of our site, and we tried to make this work easier to find. The Center is committed to doing more public engagement, so we’ve added an events area to the homepage. And we changed things throughout the site so you can get to what you want in fewer clicks.
From Hastings Bioethics Forum:
Ethics of Placebo Controls in Coronavirus Vaccine Trials
What happens once a coronavirus vaccine is proven safe and effective and approved for emergency use authorization—would it be ethical to enroll participants in other coronavirus trials that randomize half of the volunteers to receive a placebo, rather than the approved vaccine? Recent statements in the news media have said that it would be unethical. Hastings Center fellow Franklin Miller disagrees in a new essay in Hastings Bioethics Forum. Read the essay.
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Upcoming Events
Wednesday, November 18 - Thursday, November 19 - New York Academy of Science:
Synthetic Biology holds tremendous promise to revolutionize our understanding of the origins of life, the mechanisms underlying myriad biological processes, human diseases, and critical environmental issues that threaten the planet. With the advent of 21st century molecular biology techniques, including rapid and inexpensive genomic sequencing as well as methods that allow precise genetic modification, scientists have an unprecedented ability to harness biological processes to efficiently produce a wide variety of desirable chemicals. These include complex drugs, biofuels, biomaterials, and sustainable food products that have the potential to transform our quality of life. Hastings scholar Gregory Kaebnick will moderate a panel to discuss how advances in synthetic biology can positively influence human and environmental health.
Thursday, November 19 - The Hastings Center: Dr. Anthony Fauci will explore the ethical issues raised by the erosion of trust in science in a new virtual discussion hosted by The Hastings Center. The nation’s top infectious diseases official and Hastings president Mildred Solomon will look at how we can improve public understanding of complex issues in ways particularly suited to problem-solving and respectful dialogue. What is the proper balance between safety and speed when developing new therapeutics and vaccines? And who should decide when scientists and members of the public disagree? The event is part of The Hastings Center’s series, Securing Health in a Troubled Time.
The Hastings Center seeks to ensure responsible health and science policy and practice. We work to secure the wisest possible use of emerging technologies and fair, compassionate, and just health care for people across their lifespan.
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