By Matthew Chun
He Jiankui — a high-profile Chinese scientist convicted for conducting unethical gene-editing experiments — has been released from prison and is currently fundraising for his new gene therapy endeavor. As the scientific community grapples with how to respond, theories of criminal justice can provide important perspectives to better inform the conversation surrounding Dr. He’s return to research.
By Matthew Chun
A scientist’s high-tech approach to assisted suicide is already available for use in Switzerland and is actively being campaigned for in the United Kingdom. . . Could the United States be next?
By Adrian Gropper
As we inexorably digitize everyday life, for-profit “Big Tech” cannot be trusted to serve the individual or society.
Personal information must not be locked-in to a commercial tech “platform,” such as Facebook or a branded for-profit entity.
Personal information infrastructure must be treated the same way we treat infrastructure for clean water — as a fundamental human right. Two decades of privatized corporate control over personal information technology in the form of social networks and targeted advertising is evidence that market-based information services for social interaction and free speech can no longer be treated as a discretionary. Private interests are certainly welcome, but the foundational distribution system must be seen as a “commons” accessible to all for the good of all.
By Carmel Shachar
Even in September 2021, it was fairly clear that boosters for all adults, regardless of risk factors or which vaccines they initially received, would be coming soon.
Indeed, within two months, the U.S. Centers for Disease Control and Prevention (CDC) revised its recommendations to say that all vaccinated adults should receive a COVID-19 booster.
Unfortunately, the discrepancy between past messaging, which restricted access to boosters to select groups, and the current, broad recommendation has spawned two, related public health communications problems.
By Leah Pierson
The financial barriers associated with becoming a bioethicist make the field less accessible, undermining the quality and relevance of bioethics research.
Because the boundaries of the field are poorly defined, credentials often serve as a gatekeeping mechanism. For instance, the recent creation of the Healthcare Ethics Consultant-Certified (HEC-C) program, which “identifies and assesses a national standard for the professional practice of clinical healthcare ethics consulting” is a good idea in theory. But the cost of the exam starts at $495. There is no fee assistance. Given that 99 percent of those who have taken the exam have passed, the exam seems to largely serve as a financial barrier to becoming an ethics consultant.
A judge in Ohio ruled on Monday that a hospital in the region must administer ivermectin to a patient very sick with COVID-19 in their ICU, despite the decision by the medical staff, in agreement with recent statements by the U.S. Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC), that ivermectin is not an appropriate treatment, as it has been shown not to work against COVID.
The patient’s prescription came from a doctor who has no authority to treat patients at this particular hospital, although he is licensed to prescribe medicine in Ohio.
This case tracks a swelling interest, which some ascribe to the efforts of a group called America’s Front Line Doctors, among people for the anti-parasitic medication as both a treatment and prophylactic for COVID-19 — despite warnings from the medical establishment that it doesn’t work, and, if taken in the form normally given to farm animals or at the dosages being suggested, can be harmful.
The Ohio ruling is just the latest of several successful law suits (see similar cases in New York and Illinois) to order hospitals to administer ivermectin to hospitalized COVID-19 patients, despite the objections of the treating physicians.
There is also evidence of a global trend, as evidenced by the order of a court in South Africa to allow the prescription of ivermectin for COVID-19, something that was previously not permitted by the country’s drug regulatory agency.
This trend of courts ordering that treatments requested by hospitalized patients be made available by that hospital — so long as they are prescribed by a physician — opens the door to substantial administrative, legal, and ethical chaos. This post analyzes some of the most pressing legal, regulatory, and ethical concerns.
By Nikol Nesterenko, Jonathan Chernoguz, and Sarah Hooper
Advance care planning — the process by which an individual documents their wishes for health care in the event that they become incapacitated — has become particularly urgent during the COVID-19 pandemic.
However, individuals that wish to engage in advance care planning, and specifically to document their plans in a written form (i.e., advance directives), have faced significant hurdles due to legal execution requirements. State advance directive law often requires or presumes live, in-person witnessing or notarization, actions which were prohibited by social distancing orders or simply unsafe during the pandemic.
In this piece, we summarize the state of remote execution requirements for advance directives before and during the COVID-19 pandemic. Broadly speaking, while many states took some action in this regard, most did not enact comprehensive changes, and therefore failed to meaningfully facilitate remote execution of advance directives.
By William M. Sage
My message for President Joe Biden and his administration is a simple one. Invite physicians to create an ethical health care system. Demand that physicians take seriously that mission and work closely with other health professions and the public, sharing their power and authority.
Physicians’ silence in the face of massive health injustice, inefficiency, and waste must be called out by leaders of the medical profession for what it is: complicity. Commitment to an ethically indefensible status quo has made much-needed reform proposals seem morally threatening, rather than representing opportunities for ethical introspection and improvement. All those who profit from the current system — a large group, given $4,000,000,000,000 of annual U.S. health care spending — use physician complacency to justify their own resistance to change.
The U.S. health care system will not change without permission from health professionals, especially America’s physicians. Permission must be built on principle, and it should take the form of re-envisioning and reaffirming medical ethics. The need to do so has been evident for over two decades, but COVID-19 has increased its urgency.
By Jenna Becker
The exclusion of pregnant people from clinical trials has led to inequities in health care during pregnancy. Without clinical data, pregnant patients lack the drug safety evidence available to most other patients. Further, denying access to clinical trials denies pregnant people autonomy in medical decision-making.
Pregnant people still require pharmaceutical interventions after becoming pregnant. Until maternal health and autonomy is prioritized, pregnant people will be left to make medical decisions without real guidance.
By Amalia Sweet
On March 9, the Petrie-Flom Center and Harvard Law School Project on Disability gathered a panel to discuss the extent to which the pandemic has set back progress toward ensuring the rights of persons with disabilities.
Though calls for solidarity in March 2020 declared the emerging pandemic to be a “great equalizer,” the past 12 months have demonstrated how the pandemic has exacerbated existing social inequalities, disproportionately impacting the already marginalized.
The panel discussion, hosted by Petrie-Flom Center Senior Fellow in Global Health and Rights Alicia Ely Yamin and moderated by Harvard Law School Project on Disability Executive Director Michael Ashley Stein, provided voice to the uniquely and acutely devastating impacts of the pandemic on persons with disabilities, who are still struggling to secure protection of their basic rights.