Tag: financial support

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 News

Patient advocates often in cahoots with industry

Over the past few decades, hundreds of patient-advocacy organizations have emerged in the United States, promoting disease research and influencing legislation and FDA and health insurer policies. A new study has revealed that a large proportion of these organizations have funding or other connections with drug or medical device makers, but do not adequately disclose these connections.

The study, led by medical ethicists at the Perelman School of Medicine at the University of Pennsylvania and published in the New England Journal of Medicine, suggests that patient advocacy organizations should acknowledge industry connections.

Media reports have highlighted the fact that some industry-funded patient-advocacy organizations support the industry line on policy issues, for example by failing to support drug-price reform measures, and by pushing insurers to cover expensive drugs whose benefits to patients are questionable.

In the new study, the team examined websites and annual reports for 104 US-based patient-advocacy organizations with annual revenues of US$7.5 million or more.

Results showed that the vast majority received industry funding. More than 80% explicitly reported it, and most of the rest left open the possibility by providing no donor information. Only one of the 104 stated plainly that it did not accept industry funding.

Information on donations was typically provided in broad ranges, and in some cases not disclosed at all. But, among the 59 organizations that published donated amounts, 23 reported receiving at least $1 million annually.

The study revealed other connections to industry besides financial support. More than one-third of the reviewed organizations had one or more board members who were also company executives.

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

ORGAN DONATION AFTER MEDICAL AID IN DYING

Jennifer A. Chandler describes some of the ethical and legal challenges surrounding organ donation following medical assistance in dying.

__________________________________________

Today, it is medically possible to donate organs following death brought about by medical assistance in dying. This currently happens in countries like Belgium and the Netherlands. People with neurodegenerative conditions like amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, or multiple sclerosis (MS) are eligible to donate organs. Those with cancer, however, are not eligible because of risks to recipients.

In Canada, people with neurodegenerative conditions who satisfy the legal eligibility criteria for assisted dying may also meet the medical eligibility criteria for organ donation. However, this possibility raises novel ethical, legal, and policy issues that must be carefully considered. The following four hypothetical cases illustrate some of these issues.

CASE 1 – A patient seeks assisted dying and wants to donate to a family member.

Some provinces allow people to direct their organ donations to relatives after they die. Some patients who choose assisted dying may derive some comfort from being able to help a family member in this way. There is the risk, however, that patients may feel pressured to seek assisted dying, in part, to benefit a sick relative.

CASE 2 – A family member is asked to consent to cornea donation for a loved one who passed away through assisted dying. The patient was not asked about this before his death because he was not registered as an organ donor, and nobody wanted to burden him with the decision. 

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

Now Accepting Applications: Fordham/Santander Universities International Student Scholarship in Ethics Education

The 2016 Fordham/Santander Universities International Student Scholars

The application period for scholarships to attend Fordham University’s intensive three-day interdisciplinary ethics graduate course is now open! The course, or workshop, will be held May 23 – 25, 2017 at Fordham University, New York City, USA!

The Fordham/Santander Universities International Student Scholarship in Ethics Education provides direct financial support for international students who wish to pursue graduate-level study in Fordham University’s Master’s in Ethics and Society program.

Students who apply to the program through the scholarship complete the workshop titled, “CEED 6100: Theories and Applications in Contemporary Ethics” which is designed to provide cross-disciplinary perspectives on moral theory and applied ethics. Using a team-teaching approach, this course brings together faculty from at least six different disciplines to integrate foundational knowledge about moral theory from the humanities and sciences with contemporary applications and social issues.

The scholarship covers:

  • Tuition: The cost of tuition for the graduate courses and administrative fees.
  • Travel: Applicants may request funding for travel to New York City Applications should include estimates of costs, including the source for the estimate (e.g., airline website, travel agency).
  • Lodging: As part of the scholarship, housing may be provided to funded students at one of Fordham’s graduate student housing facilities.

Applications for are due March 15, 2017.

2016 Workshop Papers from Santander Scholars

Cheryl Chin: “An exploration of how healthcare clinicians have become constrained into behaving inhumanely in the context of modern healthcare and what can be done to remedy this trend”

Cornelius Ewuoso: “Institutional Norms, Moral Values and Patient’s Cultural/Religious Preferences: Overcoming Moral Distress in Physician-Patient Relationship”

Agata Ferretti: “Should there be a reproductive global market?

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

War Metaphors in Health Care: What Are They Good For?

by Kayhan Parsi, JD PhD

Protest singer Edwin Starr powerfully asked in the early 1970s: “War, what is it good for?” Apparently, it’s good enough to use in a variety of metaphorical turns of phrase. The war on poverty. The war on cancer. The war on Alzheimer’s. The war on drugs. The war metaphor seems irresistible. How else to elevate a social problem and make it the object of our intense focus and attention, not to mention financial support? These metaphors figure prominently in many areas of public life. Take policing. As scholars Peter Kraska and Victor Kappeler have stated about the use of military metaphors in policing: “The ideological filter encased within the war metaphor is ‘militarism,’ defined as a set of beliefs and values that stress the use of force and domination as appropriate means to solve problems and gain political power”. Similarly, health care is replete with militaristic metaphors. Cancer garners the most intensely militaristic metaphors. We often say that someone lost their battle with cancer. Yet cancer is not alone. As Nie and colleagues argue in this month’s target article, such militaristic metaphors are commonly found in the world of HIV cure and research. Why do we continue to use such militaristic metaphors in health care?

Thinking and speaking in metaphors is such a part of being human that it’s almost unremarkable to us. Philosopher Mark Johnson and linguist George Lakoff have made significant contributions in our understanding of how metaphorical thinking shapes our morality and our moral understanding has persuasively argued that we think imaginatively about our moral problems and that our thinking is inevitably metaphorical.

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 Costs of Chimpanzee Research

Andrew Fenton shares a cautionary tale about the Liberian chimpanzees who were abandoned after being used for vaccine research.

__________________________________________

You might have read about the end of publicly-funded invasive research on chimpanzees in the United States and thought that the fight to protect these laboratory great apes was over. The story of what has happened to a little over 60 chimpanzees living on six islands in a river estuary in southern Liberia serves as a reminder that it isn’t over yet.

These chimpanzees are not there by choice nor can the islands they live on support their nutritional needs. They are a legacy of Vilab II, a facility in southern Liberia that was run by the non-profit New York Blood Center, where chimpanzees were used in vaccine research. The original chimpanzees were procured from the illegal ‘pet’ trade or taken by force from free-living communities before being bred for research. Vilab II stopped experimenting on chimpanzees in 2005. The surviving chimpanzees were moved to the six islands. After supporting their care for about ten years, the New York Blood Center abandoned the chimpanzees.

The official reasons for ceasing support include: as a non-profit organization, their funds are “best used” to fund research that might benefit humanity (not care for a population of ex-biomedical chimpanzees); they did their bit for these chimpanzees and it’s unreasonable to think that they’re on the hook for their care in perpetuity; they’ve tried to find alternate means of support but talks with interested parties, including the Liberian government, have failed; and they actually don’t own these chimpanzees—they’re property of the Liberian nation—and the property owners are properly responsible for their care.

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 “Outing” of Sperm Donor 9623

Sperm banks continue to expand their search and selection criteria to include clinically ambiguous and frankly irrelevant donor information (favorite pets, astrological sign, hobbies). Yet their failures to verify the self-reported personal and medical histories of donors have recently prompted a set of legal complaints aimed at combating fertility clinic negligence in the unregulated assisted reproduction industry in the U.S.

Several families, including Angela Collins and Beth Hanson from Canada, have recently brought a lawsuit against one Georgia-based clinic, Xytex, and one particular donor. The legal questions are themselves significant, but the case also raises important considerations around disability, class, and genetic determinism.

Xytex, along with its distributor in Ontario, informed Collins and Hanson that Sperm Donor 9623 had an IQ of 160 and was pursuing a PhD in neuroscience, and had no history of physical or mental illness apart from his father’s colorblindness. The clinic did not verify this information, but relied on what Sperm Donor 9623 had reported. The parents, now raising their young son, were understandably shocked upon learning that his donor had in fact spent time in jail and received multiple diagnoses of mental illness.

Parents’ anger, and their concern about their families’ future, should of course be recognized and respected.  But so should the complicated set of issues that this case raises. How do we assess it while resisting genetic determinism, challenging biological explanations for class-based inequalities, and critiquing a purely medical understanding of disability? How do we negotiate the differences between human variation and costly, painful, mental illness?

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

Recent Attempts to Restrict the Abortion Law in Poland: A Commentary

Guest post by Dr Atina Krajewska, University of Sheffield

A couple of weeks ago news hit the headlines about attempts to introduce a total ban on abortion in Poland.  The legislative proposal that caused outrange among women’s rights organisations has been drafted by a citizen’s initiative, “Stop Abortion”, and is the fourth attempt to restrict abortion access to have been given a parliamentary hearing in Poland in the last 5 years.  The proposal must be supported by 100 000 signatures before it can be voted in Parliament.  However, as this threshold has been easily met in the past, it is worth reflecting on its causes and possible legal and social consequences for Poland and Europe.

Current law

Poland is well known for its conservative approach towards reproductive rights.  The current Act on Family Planning, from 1993, extends the protection of the right to life to the prenatal phase of human life.  It allows doctors to perform lawful abortions in only three sets of circumstances: when a) the pregnancy constitutes a danger to the life or health of the mother; b) prenatal tests suggest a high risk of a serious and irreversible abnormality or a severe life-threatening illness of the foetus; c) there is a justified suspicion that the pregnancy is a result of a criminal act (rape or incest).  A lawful termination can take only place within the first 12 weeks of pregnancy.  The Act has been often criticised as one of the most restrictive in Europe.

Nevertheless, despite popular belief, it is not the current law that seems to lie at the root of the problem.

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

Online course in research ethics, spring 2016

Anyone who manages research also needs to be able to reflect on research. Not only the researchers themselves, but also funding bodies, journal editors, members of research ethics committees, administrators, journalists, organizations, politicians, and others.

How do you act if you suspect research misconduct, and what is it? What are the ethical and legal regulations governing data management or research on humans and animals?

If you want to learn more about these issues, or perhaps about publication ethics and authorship rules, conflicts of interest, mentor/trainee responsibilities, biosecurity and more – then we can help you. We give an online course in research ethics for medicine and the life sciences.

The course runs for ten weeks, from April 4 to June 10, every week with its own theme (the last week is devoted to sharing what you learned with your home institution). The course includes video lectures and texts to read, but also interactive exercises and regular e-meetings with other students and with the teacher.

The course is given in English and is open to students from all over the world. If you want to know what some of the former students have to say about the course, you can read more here. And if you want to know who the course is aimed at, read more here.

Research ethical responsibility is vital and it is important that ethics education reaches out. The course fee is € 1.125 (including tax), and to students who cannot receive financial support from their home institution we offer a limited number of scholarships for which application deadline is February 15.

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

CRISPR-mania in China

The new CRISPR as a technology only really came into the public spotlight last year. But already dozens, if not hundreds, of Chinese research hubs are using the technique on a range of animals.

CRISPR research is being supported in China via grants from the National Natural Science Foundation of China, Ministry of Agriculture, Ministry of Science and Technology as well as provincial governments.

In the past year alone, numerous articles have been published in leading journals documenting the use of CRISPR by Chinese scientists to create genetically enhanced goats, sheep, pigs, monkeys and dogs, among other mammals. In a September edition of Nature’s Scientific Reports, for example, geneticists Xiaolong Wang and Yulin Chen from Northwest A&F University published the results of study into enhancing goat muscle and hair growth. In early-stage goat embryos the researchers had successfully deleted two genes which suppress both hair and muscle growth. The result was 10 kids exhibiting both larger muscles and longer fur. So far,  no other abnormalities have appeared. 

And the Chinese genomics BGI recently announced that their institute will be selling ‘micropigs’ as pets. The institute originally created the micropigs as models for human disease, by applying a gene-editing technique to a small breed of pig known as Bama. 

“[CRISPR research] is a priority area for the Chinese Academy of Sciences,” Minhua Hu, a geneticist at the Guangzhou General Pharmaceutical Research Institute, told the Scientific American. A colleague, Liangxue Lai of the Guangzhou Institutes of Biomedicine and Health, added that “China’s government has allocated a lot of financial support in genetically modified animals in both [the] agriculture field [and the] biomedicine field.”

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.