Tag: health care

Bioethics Blogs

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Better Care Act Targets Immigrants

If you need yet another reason to conclude that the Senate Republicans’ proposed health care bill – the so-called Better Care Reconciliation Act (BCRA)– is designed more to appease different parts of the Republican base than improve the health care … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & bioethics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Making health care safer: what good looks like

By John Tingle It’s fair to say that patient safety and health quality reports in recent years have tended to focus on what is going wrong in the NHS and what needs to be done to put things right.We have … Continue reading

Source: Bill of Health, examining the intersection of law and health care, biotech & bioethics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Impossibility of the Inert: Placebo and the Essence of Healing by Thomas J. Csordas

The concept of placebo is predicated on the opposition between active and inert, deploying this opposition to assert that an action or substance with no inherent active principle can have a paradoxical effect “as if” it were active.1 My thesis is that there is no such thing as the inert in human affairs, relationships, or experience. Think of the apparently simple retort of the bullied child that “sticks and stone may break my bones but names can never hurt me.” Contrary to this retort, names can indeed hurt. They are not inert, but carry an actual force identifiable as hate or disdain. And what of the retort itself? Is it a vain, desperate, and ultimately inert act of self-protection, effective only insofar as it taps into the “as if” logic of the placebo? I think not, though like any remedy it must be applied under the right conditions and with the understanding that it may not be uniformly effective in the degree to which it buffers the noxious influence of name-calling with an equivalent, self-confident force of self-esteem. There is also, however, an easily overlooked element of materiality in the retort. That is its rhythm: the fact that it is phrased in trochaic meter. It is not only that meter adds the force of incantation or song, but that it directly engages the embodied existential immediacy of the situation, contributing an element of jauntiness encompassing not only tone of voice but posture and gesture.

The notion of materiality as I have just used it is of value in reflecting on the impossibility of the inert.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Two Random Thoughts about Health Care Policy and Justice

I haven’t yet read the Senate Republicans’ draft health care bill, just out today.  Until I do I’m not going to comment about it directly.

The matter is a bioethics concern solely from the perspective of justice, really.  What is the wisest, most just policy?  And here one is forced, I think, into a fairly utilitarian assessment of what approach provides the best outcome for the country overall?  In that, we can allow for a “priority concern” for pool or relatively poor folks, allowing a weighting of factors in their favor.  In fact, I’m all for that.

But two thoughts.  First, I and others tend to argue that we should reform Medicare and Medicaid and not just leave them as they are, because to do so is to ratify their demise into bankruptcy or unaffordability.  That argument is open to two charges: that it assumes that forecasts of rapid demise are reliable, and that preserving the programs, in a sustainable form, favors future generations at the expense of the current ones.  On the latter, to wit:  Most people would agree that “my” (i.e., someone’s in general) duty to people close to them (like spouse, children) is greater than to a stranger.  But can we not say the same thing about generations?  Isn’t our duty to people already among us greater than, say, our envisioned duty to our grandchildren and great-grandchildren, even if they are ours and not someone else’s?  I suppose that one might argue that.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Global Bioethics Initiative (GBI) launches its third edition Summer School Program

Global Bioethics Initiative (GBI) launches its third edition Summer School Program

New York, New York June 19, 2017, GBI starts its summer school program sponsored by Pace University, College of Health Professions and New York Medical College. Lead by experts in the field of Bioethics, students and professionals will witness Bioethics in various forms such as film screenings, field trips, and lectures/seminars, ending with a completion ceremony. Topics addressed in the program are: embryonic stem cell research, cloning, gene therapy, end-of-life care, genetics, reproductive technologies, human subject research, organ transplantation and access to health care.

“I am absolutely confident you leave this program enriched,”said Dr. Bruce Gelb, President of GBI. “You will find that what you learn over the coming days, will impact how you interact and engage with the world in many aspects of life.”

“There is a lack of opportunities for undergraduate, graduate students and professionals to learn about practical bioethics and GBI summer school helps to fill this void,” said​ Ana Lita, Co-Founder and Executive Director of GBI.

GBI is a not-for-profit international educational organization founded in 2011, by Dr. Ana Lita. GBI keeps the international community, policy decision-makers, the media, and the public versed in bioethical concepts. GBI provides this level of knowledge through an annual summer school program, human rights advocacy, and public policy reviews. GBI is associated with the United Nations Department of Information (UNDPI) with special consultative status with the United Nations Economic and Social Council (ECOSOC).

Attendees are encouraged to join Dr. Harriet R. Feldman, Dr. Charles Debrovner, and Dr. Ana Lita for the program’s introductory cocktail reception on June 20th, from 6-9PM at Pace University’s Aniello Bianco Room, 1 Pace Plaza, New York, New York,  featuring the singer, Sarah Hayes and​ her Trio​.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Precision Oncology: Gene Changes Predict Immunotherapy Response

Caption: Adapted from scanning electron micrograph of cytotoxic T cells (red) attacking a cancer cell (white).
Credits: Rita Elena Serda, Baylor College of Medicine; Jill George, NIH

There’s been tremendous excitement in the cancer community recently about the life-saving potential of immunotherapy. In this treatment strategy, a patient’s own immune system is enlisted to control and, in some cases, even cure the cancer. But despite many dramatic stories of response, immunotherapy doesn’t work for everyone. A major challenge has been figuring out how to identify with greater precision which patients are most likely to benefit from this new approach, and how to use that information to develop strategies to expand immunotherapy’s potential.

A couple of years ago, I wrote about early progress on this front, highlighting a small study in which NIH-funded researchers were able to predict which people with colorectal and other types of cancer would benefit from an immunotherapy drug called pembrolizumab (Keytruda®). The key seemed to be that tumors with defects affecting the “mismatch repair” pathway were more likely to benefit. Mismatch repair is involved in fixing small glitches that occur when DNA is copied during cell division. If a tumor is deficient in mismatch repair, it contains many more DNA mutations than other tumors—and, as it turns out, immunotherapy appears to be most effective against tumors with many mutations.

Now, I’m pleased to report more promising news from that clinical trial of pembrolizumab, which was expanded to include 86 adults with 12 different types of mismatch repair-deficient cancers that had been previously treated with at least one type of standard therapy [1].

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Stakes of Life: Science, states, policies, publics and ‘the first thousand days’ by Fiona C. Ross

Welcome back to the “First Thousand Days of LifeSomatosphere series. Here we continue to explore the ways that a global health initiative driven by new findings in epigenetics and neuroscience and by a reframing of theories about health and disease in terms of developmental origins shape ideas about (global) health and population futures, invigorate campaigns, and take form and settle in localized contexts. Understanding the links between science, biomedicine, policy, population, well-being and relationship as simultaneously both meshed and contingent, our series posits questions about what affordances and limitations lie in new modalities of understanding human illness and well-being. It examines how policy is made and with what effects for its recipients, how states are implicated in health and its others, what forms of the everyday materialize under the lens of new findings in epigenetics and epidemiology, what modalities of knowing emerge and how they settle with older forms, and how ethnography might contribute.

Describing the research programme driven by the Thousand Days research group at the University of Cape Town, I noted that,

The emergent field both synergises a range of disciplines in the bio- and social sciences and develops new sites of humanitarian intervention, reframing current debates about population, well-being and ‘the best interests of the child’ in newly biological ways. As these findings are taken up in policy and practice, we are witnessing the making of a social object with material effects’ (www.thousanddays.uct.ac.za).

Our project has explored that making, its prior conditions and its effects.  As Michelle Pentecost noted in her opening to the Somatosphere series, the framing ‘offers fertile ground for careful thought about contemporary concepts of life, life-giving and care, offering spaces for critically assessing not only how states and people understand and enable health and well-being but also how life is conceptualized by different disciplines.’  We have traced both the ways that medical and scientific knowledge about life come to be interpolated in everyday worlds and the ways that people engage with, respond to – or indeed, ignore and subvert – it as they grapple with the possibilities that reproductive worlds afford.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care

The American Society for Bioethics and Humanities (ASBH) announces the publication of A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care.


Authored by the ASBH Clinical Ethics Consultation Affairs Committee, this 160-page study guide provides an unfolding approach to 12 cases—9 involving adult patients, 3 involving minors—on various topics in clinical ethics. The presentation of these complex cases mimics the way that they evolve incrementally in the clinical setting: Patient and family narratives are interwoven with skills-based, reflective study questions that encourage critical thinking on the part of ethics consultants, ethics committee members, students, and other healthcare professionals.


All healthcare professionals and students seeking to build their competencies, from the basic skills used to address common ethical issues to advanced consultative skills that can be used to address complex ethical concerns, will find this resource useful. 


Included are tips related to communication and decision making in medicine, including strategies for guiding fruitful patient interviews, elucidating patients’ or surrogates’ concerns or perspectives, and conducting family meetings. 

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

The Platinum Patients

Each year, 1 in every 20 Americans racks up just as much in medical bills as another 19 combined. This critical five percent of the U.S. population is key to solving the nation’s health care spending crisis

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.