Tag: disclosure

Bioethics Blogs

Fetuses and Full Disclosure

Medicine has a notoriously long history of paternalism, particularly with regards to reproductive health. The past century has seen everything from forced sterilization of people of color and those with intellectual disabilities to nondisclosure of sexually transmitted diseases. Physicians have fought to regain the trust of the community through disclosure of key medical information and shared decision making, both of which are essential underpinnings of the bioethical principle of autonomy. Given the incredible emphasis on these concepts in contemporary medical training, it is surprising that the following law has now passed Texas Senate approval:

SB 25. A cause of action may not arise, and damages may not be awarded, on behalf of any person, based on the claim that but for the act or omission of another, a person would not have been permitted to have been born alive but would have been aborted. (b) This section may not be construed to eliminate any duty of a physician or other health care practitioner under any other applicable law.

In short, there can be no legal penalty against physicians who knowingly choose to withhold information from pregnant patients if the physician thinks it will prevent an abortion. This does not absolve the physician in question from professional consequences, like action from the Texas Medical Board. However, it does set an important precedent – namely, that the belief structure of the physician takes precedence over the rights of the patient. From a bioethical standpoint, this is an inexcusable violation of autonomy. Disclosure of all relevant information is critical to informed decision making, which is the bedrock of autonomy in the complex, jargon-laden world of modern medicine.

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

Fetuses and Full Disclosure

Medicine has a notoriously long history of paternalism, particularly with regards to reproductive health. The past century has seen everything from forced sterilization of people of color and those with intellectual disabilities to nondisclosure of sexually transmitted diseases. Physicians have fought to regain the trust of the community through disclosure of key medical information and shared decision making, both of which are essential underpinnings of the bioethical principle of autonomy. Given the incredible emphasis on these concepts in contemporary medical training, it is surprising that the following law has now passed Texas Senate approval:

SB 25. A cause of action may not arise, and damages may not be awarded, on behalf of any person, based on the claim that but for the act or omission of another, a person would not have been permitted to have been born alive but would have been aborted. (b) This section may not be construed to eliminate any duty of a physician or other health care practitioner under any other applicable law.

In short, there can be no legal penalty against physicians who knowingly choose to withhold information from pregnant patients if the physician thinks it will prevent an abortion. This does not absolve the physician in question from professional consequences, like action from the Texas Medical Board. However, it does set an important precedent – namely, that the belief structure of the physician takes precedence over the rights of the patient. From a bioethical standpoint, this is an inexcusable violation of autonomy. Disclosure of all relevant information is critical to informed decision making, which is the bedrock of autonomy in the complex, jargon-laden world of modern medicine.

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

Disclosure, Doctors and Social Media

As doctors and health professionals take to public spaces like Twitter and Facebook to curate and create we face new challenges. One of the challenges is how to disclose our relationship to the organizations and products. How do we disclose conflict of interest in so many different kinds of venues?

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

Expert Advisory Committees & Conflict of Interest

Jean-Christophe Bélisle-Pipon, Louise Ringuette, and Bryn Williams-Jones describe a five-step approach for managing conflicts of interest in public health decision-making.

__________________________________________

On a regular basis, shocking news filters into the media about conflicts of interest within public organizations that contribute to policy-making. When such allegations are proven true, public scepticism about whether public interests or commercial interests inform policy-making increases.

Public health decision-making, especially in areas of complex science, is generally supported by expert advice. One such area is publicly-funded immunization. In Canada, the National Advisory Committee on Immunization is an advisory body to the Public Health Agency of Canada, while the provinces and territories rely on advice from local expert advisory committees.

Members of immunization expert advisory committees have an important role to play in guiding public health decision-making, particularly with regard to the selection of vaccines and the scheduling of immunizations. Given this important role, independence and transparency are expected. One mechanism for promoting independence is a robust, publicly available conflict of interest policy.

We suggest a simple five-step approach for better managing conflicts of interest.

First, ask the right questions and identify red flags. What are the interests at stake and for whom?

For example, consider situations where one or more committee members receive(s) significant funding from industry. Are there external interests, as a result of this funding, that may influence the committee’s mandate and activities? This concern applies to private companies with products or business activities related to immunization, or with connections to certain advocacy or interest groups.

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

UK report on prenatal testing calls for ban on sex disclosure

A new report by the UK’s Nuffield Council on Bioethics, “Non-invasive prenatal testing: ethical issues”, has probably pleased no one by trying to steer a course between banning abortions for sex-selection and allowing abortions for the most common kind of foetal abnormalities.

NIPT is a major breakthrough. It uses a blood sample taken from the pregnant woman and can be done from 9 or 10 weeks of pregnancy. It analyses DNA from the placenta that circulates in the woman’s blood to estimate the chance that the fetus has Down’s, Edwards’ or Patau’s syndromes, as well as single-gene disorders like cystic fibrosis and achondroplasia. It can also determine its sex.

The test is currently available in the UK through private hospitals and clinics, and in some NHS (ie, public) hospitals. Last year, the UK Government announced that from 2018, the NHS will offer NIPT to pregnant women who have been found through initial screening to have at least a 1 in 150 likelihood of having a fetus with Down’s, Patau’s or Edwards’ syndromes.

The report says that NIPT should lead to fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage. In the case of Down syndrome fetuses, 200 more would be identified (with 90% or more being aborted) and 17 fewer miscarriages of healthy foetuses because of invasive tests.

In addition, the Nuffield Council calls for a moratorium on the use of NIPT in sequencing the whole genome of fetuses; it wants a ban on its use in finding out the sex of the fetus because that would lead to sex-selective abortion.

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

In the Journals: February 2017 by Christine Sargent

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self.

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

User Beware: Privacy Settings just a Facade

Image via

By Brenda Curtis, Ph.D.

Social media platforms continue to improve and refine their privacy settings as the demand for advanced user protections increases. Although enabling catered privacy settings to online profiles allows users to indicate who they would like share personal information with, it does not necessarily protect them from the platforms – i.e. websites and apps – themselves. Since social media accounts provide users with a sense of control over personal data, users assume that their information is safe. However, no matter what settings or privacy protections are applied to personal profiles, users do not generally have control over the online platform itself. What this means is the website or app being used usually shares information from accounts with third parties like advertising agencies or other databases. This data sharing is widespread throughout the industry, but it is not generally known by the public. This is partly because the disclosure of this sharing is done in the social media platform’s “Terms and Conditions” Which are often skimmed over or ignored.

Aside from social media websites, there are several other websites and apps that access your personal information via this information sharing to create a single database for everyone in the country. This is generally called data aggregation. One such site that has been in the news recently is FamilyTreeNow.  FamilyTreeNow is explicitly a genealogy site, and compiles information from various legal online sources to create a database full of personal information for genealogical research. This site pairs information from public records such as police records and court documents with the information collected from social media and address databases to create a sometimes way too revealing profile.

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

Reflect, Reframe, Remember: Takeaways from AER16

This year’s Advancing Ethical Research (AER) Conference provided me with the depth of knowledge I was expecting, but also with a new perspective that I had not anticipated. Full disclosure: I went to this conference assuming the pre-conference program would be most applicable and useful to my job. The pre-conference that I attended, IRB201, was, indeed, amazing. I walked away having memorized the 45 CFR 46.111 criteria for IRB review and approval and the ability to apply them to a protocol (or at least a practice protocol). Over the last few weeks, this new skill has carried me far; it has substantially refined my pre-review process, allowing me to more thoroughly and efficiently deliver an IRB protocol to my IRB administrator for her review. As one of just four IRB staff members at my institution, anything that streamlines the process and decreases burden is welcomed, and my newfound efficiency has not gone unnoticed or unappreciated.

The post Reflect, Reframe, Remember: Takeaways from AER16 appeared first on Ampersand.

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

Professional Codes and Diagnosis at a Distance

This is the second part of my response to Trish Greenhalgh’s post on the propriety of medics, psychiatrists in particular, offering diagnoses of Donald Trump’s mental health.  In the last post, I concentrated on some of the problems associated with making such a diagnosis (or, on reflection, what might be better called a “quasi-diagnosis”).  In this, I’m going to concentrate on the professional regulation aspect.

Greenhalgh notes that, as a UK medic, she is bound by the GMC’s Duties of a Doctor guidance,

which – to my surprise – does not explicitly cover the question of a doctor’s duty towards a public figure who is not his or her patient.

[…]

My reading of the GMC guidance is that in extreme circumstances, even acknowledging the expectation of how doctors should normally behave, it may occasionally be justified to raise concerns about a public figure (for example, when the individual is relentlessly pursuing a course of action that places many lives at risk). Expressing clinical concern in such circumstances seems to involve a comparable ethical trade-off to the public interest disclosure advice (Duties of a Doctor paragraphs 53-56) that breach of patient confidentiality may be justified in order “to prevent a serious risk of harm to others.”

Well, to be honest, it’s not that much of a surprise to me that the GMC guidelines doesn’t stretch to public figures – but that’s a minor point.

The more interesting thing for me is what the relationship is between the practitioner and the GMC.  Greenhalgh ends her post by saying that she “wrote this blog to promote further debate on the topic and invite the GMC to clarify its position on it”. 

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

In the Journals – January 2017 by Anna Zogas

Welcome to a new year of Somatosphere’s In the Journals section! Here are some of the articles available in January 2017. Enjoy!

Medical Anthropology

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States
Matthew Wolf-Meyer & Celina Callahan-Kapoor

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Decoding the Type 2 Diabetes Epidemic in Rural India (open access)
Matthew Little, Sally Humphries, Kirit Patel & Cate Dewey

Type 2 diabetes mellitus is an escalating public health problem in India, associated with genetic susceptibility, dietary shift, and rapid lifestyle changes. Historically a disease of the urban elite, quantitative studies have recently confirmed rising prevalence rates among marginalized populations in rural India. To analyze the role of cultural and sociopolitical factors in diabetes onset and management, we employed in-depth interviews and focus groups within a rural community of Tamil Nadu.

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.