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Data Book explores consent through the story of Henrietta Lacks and talks germline editing with Marcy Darnovsky, Ph.D.
In 1951, Henrietta Lacks walked into Johns Hopkins Hospital complaining of vaginal bleeding. Although she died later that year, her legacy lives on. Why? Because researchers took her cells and shared them with colleagues, conducting countless studies that have fueled findings in many areas. And they did so without her permission.
Henrietta’s story is incredible on several levels: First, her cells, transformed by radium, were unique in their ability not only to survive the laboratory but to thrive. Second, she unwittingly advanced medical and scientific research. Third, she never knew of her remarkable contribution to science, making her story a case study on consent, public trust and medical ethics.
Now, in 2018, gene editing is no longer the stuff of science fiction. It is real, and many gene-editing therapies, such as treatments involving chimeric antigen receptor T-cells and CRISPR, could forever change medicine. They could — no, they are ushering in the age of precision medicine. Their enormous costs have also contributed to the rise of value-based care, as certain therapies earn pharma companies payments only when they prove effective.
But, as noted in this Healthcare Analytics News™ feature story, ethical issues abound. For some, the very act of editing the genome might be a cultural or religious violation. Then there’s germline editing, which produces changes that are passed down to a patient’s offspring. On this episode of Data Book, we welcome Marcy Darnovsky, Ph.D., who heads the Center for Genetics and Society, to discuss what’s at stake and how society and healthcare organizations and providers may frankly and effectively navigate these issues.
And, yes, we tie the ethics of gene editing back to Henrietta Lacks. Although the two aren’t perfect parallels, we can learn a lot about where we are and what must be done going forward by studying what happened in the past.
Here’s a friendly reminder that Data Book now publishes every other week. We’re sorry if you missed us last Friday, but always feel free to peruse older episodes. And please subscribe, rate and review the show on iTunes, Google Play, Spotify or wherever you gobble up your podcasts.
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