Tag: donors

Bioethics Blogs

My Sister’s Keeper: An Assessment of Living Organ Donation among Minors

by Alex Fleming

The 2009 film My Sister’s Keeper, based on Jodi Picoult’s 2004 New York Times bestselling novel which bears the same name, is among other things, a controversial story about a young girl (Anna Fitzgerald) who sues her own parents in order to obtain legal rights to the use of her body. For as long as she can remember, Anna has unwillingly been providing blood and bone marrow to her older and critically ill sister, Kate. As the story unfolds, tension within the family arises as the 13 year-old Anna Fitzgerald becomes fully aware of her reason for existence, so to speak, which is to prevent the death of her older sister by providing a regular supply of blood and bone marrow, which she has done regularly for several years. Later on, as Kate’s condition worsens and her renal function begins to fail, the parents naturally turn to Anna to provide what could be a life-saving kidney transplant for her older sister. The climax of the story begins as Anna confidently and heroically refuses. The story raises a slew of bioethical issues which are beyond the scope of this essay; however, the story sheds light on a topic worthy of discussion: living organ donation among minors.

As the supply of organs suitable for transplantation decreases and the demand for them increases, the question of living organ donation among those yet of age has become a question of greater concern, primarily among those who point to the various ethical implications which such a procedure creates.

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 – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

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

Donor Spotlight

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.

Bioethics News

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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.

Bioethics Blogs

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.

Bioethics Blogs

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.

Bioethics Blogs

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.

Bioethics Blogs

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.

Bioethics Blogs

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.

Bioethics Blogs

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.