Doctor, DNA, microscope concept illustration.

Reclassification of Genetic Test Results: Potential Time Bombs in the Medical Record? 

By Ellen Wright Clayton

Findings from genetic tests are not static; as knowledge advances, our understanding of the implications of these results evolves.

But what this means for physicians and their duties to patients is unresolved, as I explain with co-authors in a new article in Genetics in Medicine, the official journal of the ACMG.

There is an increasing drumbeat of support for an ethical and legal duty for physicians to reinterpret genetic test results and re-contact patients about these new understandings to improve their care.

Currently, reviewing prior medical records is by no means routine. Clinicians may review past records if they suspect that they have missed something as symptoms evolve, or that the significance of a symptom or biomarker may have changed because of new research.

Read More

Senior citizen woman in wheelchair in a nursing home.

COVID-19 and Dementia Care: Lessons for the Future

By Marie Clouqueur, Brent P. Forester, and Ipsit V. Vahia

Alongside the COVID-19 epidemic in the U.S., the country faces another public health epidemic: dementia, and particularly Alzheimer’s disease.

Currently one in nine older adults in the U.S. — 6.2 million — have Alzheimer’s disease. The number of adults with Alzheimer’s in the U.S. will increase rapidly as the Baby Boomers age — it is expected to double by 2050.

The COVID-19 pandemic has exacerbated the situation. Acute, surging demand for dementia care services will turn into a persistent problem if we do not increase our capacity for services and better support our frontline workers. We have a chance now to reflect and take action to prepare for what is coming.

Read More

Home innovation technology concept illustration.

Call for Abstracts — 2022 Petrie-Flom Center Annual Conference: Diagnosing in the Home

Contribute to the 2022 Petrie-Flom Center Annual Conference and subsequent book project!

Through October 14, 2021, the Petrie-Flom Center is accepting abstracts for its annual conference. The 2022 annual conference will focus on ethical, legal, and regulatory challenges and opportunities around at home digital health technology.

This conference will engage with the vision for a 21st century health care system that embraces the potential of at home digital products to support diagnoses, improve care, encourage caregivers, maximize pandemic resilience, and allow individuals to stay within the home when preferable. The goals of this conference and subsequent book project are to consider the ethical, sociological, regulatory, and legal challenges and opportunities presented by the implementation of digital products that support clinical diagnosis and/or treatment in patients’ homes over the next decade.

Interested in submitting an abstract, but want to know more about what we’re looking for? Read through the following frequently asked questions.

Read More

WASHINGTON, DC - OCT. 8, 2019: Rally for LGBTQ rights outside Supreme Court as Justices hear oral arguments in three cases dealing with discrimination in the workplace because of sexual orientation.

The Many Harms of State Bills Blocking Youth Access to Gender-Affirming Care

By Chloe Reichel

State legislation blocking trans youth from accessing gender-affirming care puts kids at risk, thwarts physician autonomy, and potentially violates a number of federal laws, write Jack L. Turban, Katherine L. Kraschel, and I. Glenn Cohen in a viewpoint published today in JAMA.

So far this year, 15 states have proposed bills that would limit access to gender-affirming care. One of these bills, Arkansas’ HB1570/SB347, already has become law.

This legislative trend should be troubling to all, explained Cohen, Faculty Director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. In an email interview, he highlighted “how exceptionally restrictive these proposed laws are,” adding that they are “out of step with usual medical, ethical, and legal rules regarding discretion of the medical profession and space for parental decision-making.”

Turban, child and adolescent psychiatry fellow at Stanford University School of Medicine also offered further insight as to the medical and legal concerns these bills raise over email.

Read More

Emergency department entrance.

Be a Transformational President, Mr. Biden: Launch a Commission to Create an Ethical Health Care System

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.

Read More

Senior citizen woman in wheelchair in a nursing home.

Telehealth and the Future of Long-Term Care

Join us on Wednesday, April 7 for further discussion of these issues during our virtual event, “Triumphs & Tensions of the Telehealth Boom.

By Tara Sklar

The COVID-19 pandemic accelerated the trend away from providing health care and long-term care in institutional settings in ways not previously imagined; the result of a reckoning with the massacre that disproportionately killed hundreds of thousands of older adults living in nursing homes or similar congregate facilities, along with the staff who cared for them.

Beyond the immediate staffing and infection control issues at hand, this juncture leads to a larger question, in the U.S. and abroad: how can we best care for an older population in the decades — and not just years — ahead?

The major advances and shortfalls that have surfaced during the pandemic around telehealth and its related technologies in digital home health care are essential to this discussion.

Read More

Field hospital in NY during COVID-19 pandemic.

Ethical and Legal Challenges Faced by Hospitals in New York’s First COVID-19 Surge

By Zachary E. Shapiro

After COVID-19 reached the United States, New York City quickly became the epicenter of the pandemic. Clinicians at New York Presbyterian Hospital-Weill Cornell Medical Center turned to the Clinical Ethics Consultation Service to help meet the ethical challenges that arose. During the surge, the Ethics Team saw a marked increase in the volume of consultations for individual patients in the hospital, and took part in over 2,500 informal consultations with caregivers. Discussions centered around a wide range of ethical issues distinct from those that come up in routine practice. As one of the only lawyers in the Division of Medical Ethics at Weill Cornell Medical College, I encountered a myriad of legal concerns presented by the pandemic.

During the height of the surge in New York, there was no formal legal guidance available to clinicians concerning medical practice during a pandemic. Questions about legal immunity abounded, as unclear state and federal guidance left many doctors worried that they were taking personal and professional risks by providing care to COVID-19 patients.

The pandemic forced doctors to shift away from traditional standards of care in terms of resuscitation, patient care, and surrogate decision-making. The ethics team had to take new dynamics into account, such as the risk of infection to doctors and staff, and balance these factors in the risk/benefit calculations for treatments and interventions. Undertaking these shifts without federal or state guidance caused significant distress and concern. It often seemed that the law was not only not helpful, but an active hindrance to medical practice, as many health care workers were consumed by worry about the prospect of future liability. This concern persisted, even though the deviations in the standard of practice were necessitated by the realities of the pandemic overwhelming our health care system.

Read More

NHS building

Health Care Providers’ Legal Duty to Be Open and Honest with Patients

By John Tingle

Last September, the first ever prosecution of a National Health Service (NHS) trust for failure to comply with the regulation concerning duty of candor was adjudicated.

University Hospitals Plymouth NHS Trust was ordered to pay a total of £12,565 after admitting it failed to disclose details relating to a surgical procedure and to apologize following the death of a 91-year-old woman.

Duties of candor require that patients be informed of adverse events as soon as possible after they occur. These duties serve as mechanisms to help balance power dynamics in health care and to advance patient rights. In England, duties of candor are contained in the professional codes of ethics of doctors and nurses, and in statutory regulations.

Read More

Miami Downtown, FL, USA - MAY 31, 2020: Woman leading a group of demonstrators on road protesting for human rights and against racism.

Intentional Commitments to Diversity, Equity, Inclusion Needed in Health Care

By Eloho E. Akpovi

“They told me my baby was going to die.” Those words have sat with me since my acting internship in OB/GYN last summer. They were spoken by a young, Black, pregnant patient presenting to the emergency room to rule out preeclampsia.

As a Black woman and a medical student, those words were chilling. They reflect a health care system that is not built to provide the best care for Black patients and trains health care professionals in a way that is tone-deaf to racism and its manifestations in patient care.

Read More

Hourglass

A Medical Student Reflects on the Value of Time During the COVID-19 Pandemic

By Jess Ma

He passed away on the 107th day. After I got home in the evening, I wrote down everything I could remember about him in my journal. For many days after his death, I often dreamed I was standing in that fluorescently bright ICU room. In the dreams, I would be watching him, and then he would wake up and start speaking to me, with those bright blue eyes glittering with animation and life. I always awoke feeling a little unsettled, not by his death, but rather by the fact that I knew so intimately the ways in which he was kept alive, and yet nothing about the life he lived until just hours before his final breath.

He was an existing patient on the unit when I joined the surgical ICU team, and for 10 days I followed him, tracking how every organ system was doing each day. Everyone on the team knew there was only one way this would end; his quality of life had deteriorated so rapidly since the early summer, after a bout of necrotizing pancreatitis and multiple tragic complications; he was barely able to interact with his own body, much less his environment, and his life was propped up precariously by every possible machine that could perform the function of a vital organ. For him, no medical intervention would add more significant chapters to his story. It was just a matter of when his daughter would be ready to close the book.

Because of the pandemic, visitors were only allowed after 12pm each day. When his adult daughter came to visit each afternoon, I was told to avoid intruding on their cherished private time together. I only ever really saw her shadow behind the drawn curtain as I walked past the room; and I knew that one of the surgeons on the service (a group of surgeons rotated between trauma, acute care, and surgical ICU) would routinely give her calls or meet up with her to discuss how her father was doing, even on days he had off. Surgeons are not generally thought off as doctors who can spend a lot of time just talking to patients – after all, in the time he spent on one of those daily conversations, he could complete an appendectomy. Though neither he, nor the rest of the team, could offer a magic solution, what he offered was crucial – his time.

Read More