Tag: donors

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The Berman Institute takes on some of the greatest challenges facing the world today—challenges that lie at the heart of progress and our humanity. As one of the largest and most distinguished bioethics programs in the world, it is Johns Hopkins University’s home for bioethics scholarship and teaching, working with and within the schools of Public Health, Medicine, Advanced International Studies, Nursing, and, Arts and Sciences. The Institute’s work helps foresee and inform debates on complex moral challenges; discerns ethically acceptable alternatives in medical, scientific, and public health policy; and helps to prepare the next generation of health professionals as well as scholars in bioethics.

Our work would not be possible without the generosity of our donors. Philanthropy is the foundation on which Johns Hopkins and the Berman Institute were built, and continues to fuel them today, powering the engine of discovery and helping us to build a better world.

Long standing Johns Hopkins Berman Institute National Advisory Board member and supporter, Stephanie Cooper Greenberg, shares her observations on the institute’s role in navigating these complicated times.

“In the world we live in, there’s never been more need for the Berman Institute of Bioethics and its remarkable scholars who help us understand and decode the intricacies of fast moving science and medicine that affect our daily lives. When a bioethical challenge crops up on the front page or in the course of daily living, I know that those at the Berman Institute have already thought it through, and have helped me and others better understand the heart of the issue, what’s at stake, and helps me, and others, make an informed opinion.

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.

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No Pain, All Gain: The Case for Farming Organs in Brainless Humans

Guest post by Ruth Stirton, University of Sussex (@RuthStirton) and David Lawrence, Newcastle University (@Biojammer)

It is widely acknowledged that there is a nationwide shortage of organs for transplantation purposes.  In 2016, 400 people died whilst on the organ waiting list.  Asking for donors is not working fast enough.  We should explore all avenues to alleviate this problem, which must include considering options that appear distasteful.  As the world gets safer, and fewer young people die in circumstances conducive to the donation of their organs, there is only so much that increased efficiency in collection (through improved procedures and storage) can do to increase the number of human organs available for transplantation. Xenotransplantation – the transplantation of animal organs into humans – gives us the possibility of saving lives that we would certainly lose otherwise.

There are major scientific hurdles in the way of transplanting whole animal organs into humans, including significant potential problems with incompatibility and consequent rejection.  There is, however, useful similarity between human and pig cells, which means that using pigs as the source of organs is the most likely to be viable.  Assuming, for the moment, that we can solve the scientific challenges with doing so, the bigger issue is the question of whether we should engage in xenotransplantation.

A significant challenge to this practice is that it is probably unethical to use an animal in this way for the benefit of humans. Pigs in particular have a relatively high level of sentience and consciousness, which should not be dismissed lightly. 

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.

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Human Milk Banking in Guatemala City: All for All

Martha Paynter compares human milk banking practices in Guatemala City and Atlantic Canada.

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Last month, non-profit human milk banking staff and researchers from across the continent met in Dallas for the Human Milk Banking of North America 2017 Symposium to share best practices and new developments. The use of human donor milk is growing and non-profit banks must compete with for-profit enterprises and private milk markets. Human donor milk health and safety standards in North America continue to evolve in response to scientific evidence, epidemiological developments such as Zika, and funding changes including the recent Medicaid coverage for banked milk in New York State. While we adapt processes and goals for milk banking in North America, it is worth examining alternative models of milk bank operations.

In Atlantic Canada, for example, three level-3 Neonatal Intensive Care Units (NICU) provide human donor milk to infants under 1500 grams who are unable to receive sufficient milk from their own mothers. The milk is purchased at approximately $5/ounce, including shipping, from the Northern Star Mothers Milk Bank in Calgary. Northern Star is a private, community-based non-profit business. Milk is collected from healthy volunteer lactating women across Canada who meet donor criteria. Donors may take some medications, but not pharmaceuticals or herbs to promote lactation. Donors ship the frozen milk by courier to Northern Star, where it is pasteurized and distributed to NICUs, inpatients and outpatients across the country according to need and availability. Since opening in 2012, Northern Star has distributed over 500,000 ounces of milk.

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.

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Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns

Guest Post: Jeremy Snyder
Paper:Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns

Medical crowdfunding is a practice where users take advantage of the power of social networks to raise funds related to medical needs from friends, family, and strangers by sharing fundraising appeals online. Popular venues include GiveForward, GoFundMe, and YouCaring, among others. This practice appears to be growing in terms of the number of active campaigns, the amount of money raised, and its visibility. An analysis of five crowdfunding sites found that in 2015 41% of all fundraising campaigns were for medical needs.

Medical crowdfunding has not received a great deal of scrutiny from ethicists or other academics. We are interested in a number of questions related to medical crowdfunding, including determining what reasons are given by campaigners for potential donors to contribute to their campaigns. In order to answer this question, we recorded and analyzed the language used in 80 medical crowdfunding campaigns, focusing on campaigns by Canadians.

We found that the reasons given for donating can be broken into three groups. First, campaigners used personal appeals to encourage giving, focusing their attention on friends and family members who already knew the recipient. This personal connection to the recipient was often framed as creating a reason to give, such as that “we should gather around them as one big family and help as much as possible.” These appeals can be linked to the ethics of care and relational ethics. Second, the depth of the recipient’s need and resulting positive impact of donations were framed as creating reasons to give.

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.

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When Ideology Trumps Reason, Do The Life Sciences Resist or Capitulate?

by Craig Klugman, Ph.D.

The world of the life sciences and medicine is being changed radically in 2017. The proposed Trump budget cuts funding for the CDC, NIH, NSF, NEH, NEA, EPA, and PHS will radically change how science is done, how much science is done and by whom. The US is withdrawing from the Paris Climate Treaty. Cuts to social security that traditionally pays for medical residents have also been proposed. The American Health Care Act will take affordable health insurance away from 23 million people. For the rest of us, the AHCA means higher premiums and less coverage. At the same time, we live in an era of “fake news,” “leaks,” incendiary tweets, and loyalty as the sign of someone’s worth. What might be the impact on medicine, the life sciences and bioethics in the Trumpian era? Will the dominant political ideology affect the practice of science and medicine in more ways than economics? Can ethics help steer a course around ideology?

One change that has already occurred under Trump is an anecdotal decrease in the number of immigrants (documented and undocumented) who are seeking medical care under concern that they will be deported if they show up to hospitals and doctor’s offices. In one case, a woman was forcibly removed the hospital where she was to be treated for a brain tumor and brought to a detention center.

Certainly, there is a U.S. history of medicine following the ideology of the government. Forced sterilization, the Tuskegee Syphilis study, the US radiation experiments and the Guatemala Syphilis studies were all government financed research created to prove a particular ideology: In these cases, species-level differences between the races and that a nuclear war was “winnable.”

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.

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Who is the Father?: Sperm Donor Identification

The issue is whether the donor of sperm obtained via a sperm bank should be identified even though the donor provided the specimen with the understanding of anonymity?
The following are stories of how through current public accessibility to  DNA identification resources anonymity of the “father” is no longer guaranteed. There is an example of this accessibility in a 2010 issue of Slate and a more current example as presented in the Netherland’s Dutch News.

Providing sperm to a sperm bank is of monetary significance to both the donor and finally for the bank itself and the “donation” is still considered a needed action by society. Despite the potential with public-accessible technology and investigations as noted in the two above articles,  should the utilization of the sperm for fertilization continue to permit anonymity of the source?  Well, if the goal is to encourage further donations then a recent study in the journal “Law and the Biosciences” regarding loss of anonymity suggest a problem in procurement as outlined in the Abstract of the article.

Most sperm donation that occurs in the USA proceeds through anonymous donation. While some clinics make the identity of the sperm donor available to a donor-conceived child at age 18 as part of ‘open identification’ or ‘identity release programs,’ no US law requires clinics to do so, and the majority of individuals do not use these programs. By contrast, in many parts of the world, there have been significant legislative initiatives requiring that sperm donor identities be made available to children after a certain age (typically when the child turns 18).

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.

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Who is the Father?: Sperm Donor Identification

  

The issue is whether the donor of sperm obtained via a sperm bank should be identified even though the donor provided the specimen with the understanding of anonymity?
The following are stories of how through current public accessibility to  DNA identification resources anonymity of the “father” is no longer guaranteed. There is an example of this accessibility in a 2010 issue of Slate and a more current example as presented in the Netherland’s Dutch News.

Providing sperm to a sperm bank is of monetary significance to both the donor and finally for the bank itself and the “donation” is still considered a needed action by society. Despite the potential with public-accessible technology and investigations as noted in the two above articles,  should the utilization of the sperm for fertilization continue to permit anonymity of the source?  Well, if the goal is to encourage further donations then a recent study in the journal “Law and the Biosciences” regarding loss of anonymity suggest a problem in procurement as outlined in the Abstract of the article.

Most sperm donation that occurs in the USA proceeds through anonymous donation. While some clinics make the identity of the sperm donor available to a donor-conceived child at age 18 as part of ‘open identification’ or ‘identity release programs,’ no US law requires clinics to do so, and the majority of individuals do not use these programs. By contrast, in many parts of the world, there have been significant legislative initiatives requiring that sperm donor identities be made available to children after a certain age (typically when the child turns 18).

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.

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Interview with Arthur Caplan

by Kaitlynd Hiller and Rachel F. Bloom

It is a difficult task to succinctly describe the professional accomplishments of Arthur Caplan, PhD. For the uninitiated, Dr. Caplan is perhaps the most prominent voice in the conversation between bioethicists and the general public, as well as being a prolific writer and academic. He is currently the Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at NYU Langone Medical Center and NYU School of Medicine, having founded the Division of Bioethics there in 2012. Additionally, he co-founded the NYU Sports and Society Program, where he currently serves as Dean, and heads the ethics program for NYU’s Global Institute for Public Health. Prior to joining NYU, he created the Center for Bioethics and Department of Medical Ethics at the University of Pennsylvania Perelman School of Medicine, serving as the Sidney D. Caplan Professor of Bioethics. Dr. Caplan is a Hastings Center fellow, also holding fellowships at The New York Academy of Medicine, the College of Physicians of Philadelphia, the American Association for the Advancement of Science, and the American College of Legal Medicine. He received the lifetime achievement award of the American Society of Bioethics and Humanities in 2016.

Dr. Caplan’s experience is not at all limited to the academic realm: he has served on numerous advisory counsels at the national and international level, and is an ethics advisor for organizations tackling issues from synthetic biology to world health to compassionate care. Dr. Caplan has been awarded the McGovern Medal of the American Medical Writers Association, the Franklin Award from the City of Philadelphia, the Patricia Price Browne Prize in Biomedical Ethics, the Public Service Award from the National Science Foundation, and the Rare Impact Award from the National Organization for Rare Disorders; he also holds seven honorary degrees.

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.

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Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model

The ‘immortal’ HeLa cells. Heiti Paves/Shutterstock

When 30-year-old Henrietta Lacks walked through the doors of a Baltimore hospital in 1951 to get a “knot in the stomach” checked, she couldn’t have known she was about to change the face of medical research.

After undergoing a biopsy on her “knot”, Lacks was diagnosed with cervical cancer; it was so aggressive that she died only a few months later.

Henrietta Lacks.
Oregon State University/Flickr., CC BY-SA

But that was not the end of Lacks’s “life”. A small part of the cervical biopsy was retained and conveyed to the hospital’s tissue culture laboratory. There Dr George Gey, head of the laboratory, had been working for a few years on a system whereby human cells would continuously divide and grow in culture dishes. Gey had had no success thus far, but when he placed Lacks’s cells in culture, they behaved very differently.

Lacks’s cells survived, multiplied, grew robustly, and continued to do so for weeks and months afterwards – subsequently generating the first immortalised human cell line.

Gey never made a profit from these “HeLa” cells – named after Henrietta Lacks – but did distribute them to other scientists. Since then, the HeLa cells have been grown in countless laboratories across the globe and have now lived for twice as long outside Lacks’s body as they did inside it.

HeLa cells have revolutionised medical research, made countless contributions to medicine – from vaccine production to fertility treatment – and have been the foundation of a multi-billion dollar industry.

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.

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Is it ethical to use asystole as a death criterion to obtain more organs for transplant?

About non-heart-beating death criterion, doubts are really more clinical than ethical, we believe that until these are resolved, the use of cardiac arrest to obtain organs could be questioned.

On 19th May this year, Europa Press presented a Report by Dr Rafael Matesanz (see HERE), director of the Spanish National Transplant Organization (see also HERE), to the Spanish Health Minister Dolors Montserrat, which included transplant data for the year 2016.

The Report made reference to asystolic – defined as the complete absence of electrical activity in the myocardium – as a death criterion for organ donation, the heart is at a total standstill  (non-heart-beating donation), stating that, “it is established as the clearest way to expand the number of transplants, with a total of 494494 donors, representing a 57% increase; it accounts for 24% of all deceased donors, or in other words, 1.4 donors are in asystole”.

 

In our opinion, however, using asystole as a criterion for potentially obtaining organs raises objective ethical questions, as there are still many critical points to resolve in relation to this issue. These include:

1.- For Maastricht III donors, i.e. those in whom controlled cardiac arrest is performed:

  • Is the limitation of therapeutic effort conditioned by the subsequent donation?
  • Is the dead donor rule violated (as death occurs at a determined time and place)?
  • Is it ethically acceptable to manipulate bodies before death (placement of catheters, etc.)?

2.- For Maastricht II donors, which refers to those others who suffer a cardiac arrest and who due to unsuccessful resuscitation are considered deceased patients:

  • Is the patient in cardiac arrest transferred to the best hospital for resuscitation?

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.