Word of the year 2017 in health law and bioethics: uncertainty

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2017 was a year of great uncertainty for many areas of public policy. Health care policy was no exception, especially with a near-successful push by congressional Republicans to radically overhaul the Affordable Care Act (ACA). Medical research and bioethics also faced uncertainty, with the struggle to engage ethically with new technologies and to better understand the limits of self-determination. As we look back over the past year and anticipate the next, the overarching question remains: is it possible to manage a health law and health care system given this level of flow?

This question, among others, will be explored in the Sixth Annual Health Law Year in P/Review event to be held at Harvard Law School on December 12, 2017. The conference, which is free and open to the public, brings together leading experts to review key developments in health law over the past year and foresee what is to come. Discussion at this day-long event will cover hot topics in areas such as health policy under the new administration, regulatory issues in clinical research, end-of-life law, rights and patient advocacy, pharmaceutical policy, reproductive health and public health law.

2017 saw a new presidential administration and a new Congress. Seeking to capitalize on Republican control of the White House and both houses of Congress, congressional Republicans have sought to deliver on their campaign promise to “replace and repeal” the ACA. the propose legislation would have dramatically remodeled our healthcare landscape, including end Financial status of Medicaid as an eligibility program, and undercutting health insurance marketplaces championed by the Obama administration. Despite the fact that the ACA is not yet ten years old, it would have been a seismic shift in the way many Americans receive their health care.

Although the effort to repeal and replace the ACA was narrowly defeated, there is still significant interest in Washington, DC in reviewing the programs established by this law. The most recent attempts at tax reform, for example, include proposals End the individual mandate that requires healthy people to buy insurance before they need it. The Department of Health and Social Services has clearly stated in many letters States to welcome new proposals to revise state Medicaid and Marketplace programs, such as allowing work requirements for Medicaid enrollees. Healthcare consumers, medical providers, insurers and other key stakeholders all face the same challenge: how to move forward in a political landscape where there are no “safe” programs and anything can happen. be subject to review? From a practical point of view, when will any of the stakeholders – doctors, lawyers, policy makers, business leaders or academics – reading this blog feel that the subject is sufficiently “settled” to really start planning for the future? Or, like Shakespeare’s Banquo ghost macbethWill the shadow of disruption hang over these debates for years to come?

Another major story of 2017 was an explosion on the stage of Clustered regularly spaced short palindromic repeats (CRISPR), a major tool in genome editing technology. Although CRISPR in its modern form has been around for several years, 2017 was the year it was catapulted into public debate, as well as one more year of 14,000 CRISPR studies, new apps of CRISPR, and landmark refinements in technical.

The expansion of CRISPR suggests that there is still significant uncertainty regarding reproductive technologies, including gene editing and other technologies. In 2017 a team using the technique “corrected“Single-Cell Embryo DNA to Treat Genetic Causes of Hypertrophic Cardiomyopathy. This follows an advisory committee, convened by the National Academy of Sciences and the National Academy of Medicine, recommend New guidelines to modify embryos, lifting the widespread prospect that the human genome is never modified by asking that this technique be reserved for only the most serious medical problems. Once again, researchers, patients and regulators will have to wrestle with the growing distance between our scaling capabilities and less absolute comfort with such advances in this area – how do we make the most of technological breakthroughs while preserving our core values ​​about what it means to be human?

2017 was also a year in which we tackled an individual’s ability and right to self-determination. The sad case of Charlie Gard, a child with mitochondrial DNA depletion syndrome, brought attention to the Right to Try movement when his parents fought to remove Charlie from a British hospital to pursue experimental treatment in the United States. Possibly motivated by Charlie’s story, the Senate approved the Right to Try Act of 2017, S. 204(115), to allow the use of unapproved drugs for patients with life-threatening conditions as long as the drugs have already undergone preliminary testing in humans and continue to be evaluated by the US Food and Drug Administration. The popularity of the Right to Try movement and the global debate around Charlie Gard indicate that we continue to face uncertainty in the social consensus about when patients should have the autonomy to access experimental drugs or go to contrary to current medical and scientific advice.

On the other hand, our understanding of dementia continues to improve and therefore raises questions about the need for update legal ideas around capacity and competence. This is particularly relevant not only as the baby boomer generation continues to age, but also as journalists and healthcare professionals. speculate on President Donald Trump’s cognitive health. There remains, however, much uncertainty about our understanding of the brain, particularly as it ages, and about the best ways to incorporate this neuroscientific model into a more modern legal understanding of capacity. The issues presented in our discussions of the right to try and dementia raise a common question: to what extent are we harnessing technology and science to appropriately empower personal autonomy while reflecting other social concerns?

Author’s note

We will discuss these and other questions during the Sixth Annual Health Law Year in P/Review conference, held December 12, 2017, at Harvard Law School in Cambridge, MA. If these questions interest you, we invite you to join us because the event is free and open to the public (registration required). For those who weren’t able to join us in Cambridge, some of our conference presenters have taken part in a series of blogs here on the Health Affairs blog. Stay tuned!

The Sixth Annual Year of Health Law in P/Review is sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard Law School, Health Affairs, the Center for Health Policy and Law at Northeastern University School of Law, Harvard Health Publications at Harvard Medical School, the Program on Regulation, Therapeutics and Law (PORTAL) in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, and the Bioethics Center at Harvard Medical School.

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