Tag: bioethics

Bioethics Blogs

Bioethics & Wine

I
never thought I’d have the opportunity to use this blog title. Never, that is,
until I stumbled across a company called
Vinome, a California
start-up that offers a curated wine service based on a customer’s individual
taste profile. What makes this wine subscription service unique is not its
price (although, at around
$65 a bottle, it’s just a
bit outside of the typical price-per-bottle for many wine club members). At
Vinome, your taste profile includes not only a list of questions about your
preferences, but also information from DNA sequencing from the saliva sample
you provide to the company. The company website proclaims this is “A little
science and a lot of fun,” but
experts are skeptical about whether
there is any science involved at all.

Holding
aside the question of scientific plausibility, companies touting
direct-to-consumer genetic screening for ancestry, medical issues, or just
plain fun include information in the fine print that would give any bioethicist
pause. While the Vinome website requires patrons to check the box indicating “I
have read and understand the Vinome Informed Consent” prior to ordering, that “informed
consent” is only available if the customer
voluntarily
clicks on the informed consent link. Buried at the bottom of the informed
consent screen is a sentence that reads:

 

“You allow
Vinome to retain your data as part of Vinome’s secure research database, for
use by Vinome or its research affiliates, in an effort to improve and expand
services. If any commercial product is developed as a result of the use of your
data, there will be no financial benefit to you.”

 

In
case the business interests are still unclear, here is more from their Terms of
Service:

 

“By submitting
DNA to Vinome, you grant Vinome a perpetual, royalty-free, world-wide,
transferable license to use your de-identified DNA, and to use, host,
sublicense and distribute the anonymous resulting analysis to the extent and in
the form or context we deem appropriate on or through any media or medium and
with any technology or devices now known or hereafter developed or discovered.”

 

That’s
quite a sweeping consent, and one of which I suspect most customers will never be
aware.

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

Bioethics & Wine

I
never thought I’d have the opportunity to use this blog title. Never, that is,
until I stumbled across a company called
Vinome, a California
start-up that offers a curated wine service based on a customer’s individual
taste profile. What makes this wine subscription service unique is not its
price (although, at around
$65 a bottle, it’s just a
bit outside of the typical price-per-bottle for many wine club members). At
Vinome, your taste profile includes not only a list of questions about your
preferences, but also information from DNA sequencing from the saliva sample
you provide to the company. The company website proclaims this is “A little
science and a lot of fun,” but
experts are skeptical about whether
there is any science involved at all.

Holding
aside the question of scientific plausibility, companies touting
direct-to-consumer genetic screening for ancestry, medical issues, or just
plain fun include information in the fine print that would give any bioethicist
pause. While the Vinome website requires patrons to check the box indicating “I
have read and understand the Vinome Informed Consent” prior to ordering, that “informed
consent” is only available if the customer
voluntarily
clicks on the informed consent link. Buried at the bottom of the informed
consent screen is a sentence that reads:

 

“You allow
Vinome to retain your data as part of Vinome’s secure research database, for
use by Vinome or its research affiliates, in an effort to improve and expand
services. If any commercial product is developed as a result of the use of your
data, there will be no financial benefit to you.”

 

In
case the business interests are still unclear, here is more from their Terms of
Service:

 

“By submitting
DNA to Vinome, you grant Vinome a perpetual, royalty-free, world-wide,
transferable license to use your de-identified DNA, and to use, host,
sublicense and distribute the anonymous resulting analysis to the extent and in
the form or context we deem appropriate on or through any media or medium and
with any technology or devices now known or hereafter developed or discovered.”

 

That’s
quite a sweeping consent, and one of which I suspect most customers will never be
aware.

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 First Cut is the Deepest

March 23, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

The First Cut is the Deepest

Last week, President Trump publicly unveiled his 2018 budget proposal. If left unchanged, that financial blueprint would increase US federal defense spending by more than $50 billion, while also appropriating billions more to bolster immigration enforcement and build a 2,000 mile-long wall along the US border with Mexico. A self-proclaimed deficit hawk, the President would offset those increased expenditures will sharp cuts to the US Departments of State, Energy, Health and Human Services, and the US Environmental Protection Agency.

In sharp contrast to campaign trail promises to boost the economy, create jobs, and protect Americans at home and abroad, however, Trump’s 2018 budget is likely to do the exact opposite. Consider, for example, the proposal to cut nearly $6 billion from the US National Institutes of Health (NIH).

Made up of 27 different institutions and centers, the NIH is the largest supporter of biomedical research in the world. Through the NIH or other funding agencies, the federal government supports almost half of all the biomedical research in the US. Private businesses support another quarter, and the remainder of biomedical research support comes from state governments and nonprofit organizations.

With an annual operating budget of $30 billion, the NIH provides training and support to thousands of scientists at its main campus in Bethesda, Maryland. Moreover, through a system of extramural grants and cooperative agreements, the NIH provides financial support for research-related programs to over 2,600 institutions around the country, creating more than 300,000 full- and part-time jobs.

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

Texas Considers Letting Doctors Lie to Patients

by Craig Klugman, Ph.D.

The Texas Senate just passed a new bill (SB 25) that would shield doctors from a lawsuit if a baby is born with a disability even if the doctor knew of the concern and chose not to tell the parents. Opponents of the bill say that it permits doctors to lie to their patients if the doctor believes that knowledge might lead the woman to choose an abortion. The Houston Chronicle reports the bill’s aim is to “chip away at abortion rights.”

The Texas law does not go as far as a 2015 Arizona law that mandated physicians lie to patients by telling them that an abortion can be reversed. The new Texas bill would “allow” doctors to lie to patients and shield them from lawsuit unless the patient could prove gross negligence. The burden is on the patient to prove that the doctor should not have lied.

One of the first rules of professionalism that I teach in undergraduate and medical school bioethics courses is that in general, you never lie to the patient. Telling the truth is a bedrock concept necessary to respect patient autonomy. In order to make decisions, patients need to have knowledge of their condition and their treatment options (risks, benefits, and alternatives).

There are a few circumstances in which lying to patients is ethically acceptable: If the physician has strong reasons to believe that information would push the patient to do harm to him/herself or others, or if the family has requested that a patient not be told information because of cultural practices and the patient has agreed that she/he does not want to know the news.

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

JOB OPPORTUNITY: The Petrie-Flom Center is searching for a new Executive Director!

Executive Director The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics Harvard Law School, Cambridge, MA Learn more and apply now online! Duties & Responsibilities The Executive Director works in partnership with the Faculty Director on strategic planning and … 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

Aid-in-Dying Laws and the Physician’s Duty to Inform

Guest Post: Mara Buchbinder

Paper: Aid-in-dying laws and the physician’s duty to inform

Why do so many people assume that any clinical communication about aid-in-dying (AID, also known as assisted suicide), where it is legal, ought to be patient-initiated? Physician participants in my ongoing study tend to assume that physicians should wait for patients to initiate discussions of AID. The clinical ethics literature on communication about AID has reinforced this expectation by focusing on how to respond to patient requests. Consequently, bioethics has largely remained silent on whether there is a professional duty to inform terminally ill patients about AID laws and their clinical and legal requirements.

As a medical anthropologist, I pay attention to such gaps in professional discourse, as they often indicate ideas that are so taken for granted that they escape formal expression. In this case, bioethics’ silence on professional obligations to inform patients about AID suggests to me that initiating such a discussion is widely viewed as dangerous. But why? My recent article in the Journal of Medical Ethics began with this puzzling question.

In the United States, where my research is based, in addition to many other Western societies, there is a pervasive cultural stigma against talking about death, as described in the Institute of Medicine’s 2014 Report on Dying in America. Yet there is something bigger at stake here for physicians, who may be more accustomed than most people to talking about death and dying: the idea that mentioning the possibility of hastening one’s death can be deeply injurious to the patient and the patient-provider relationship.

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

Consent based on trust rather than information?

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

I think it is important to highlight trust as a dimension of consent to research participation. Consent based on trust need not be morally inferior to consent based on careful study of information.

However, I get puzzled over the tendency to speak of trust-based consent as almost a separate form of consent, next to informed consent. That researchers consider ethical aspects of planned research and tell about them seems to be a concrete way of manifesting responsibility, respect and trustworthiness.

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 Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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.