The Karen Ann Quinlan Case

 

Karen Ann Quinlin in 1972

Wikipedia

This video explores the profound, real-life story of Karen Ann Quinlan, a 21-year-old woman who fell into a coma after consuming alcohol and Valium while on a crash diet. Quinlan had suffered irreversible brain damage after experiencing respiratory failure. Sustained by a ventilator and feeding tube, she entered a persistent vegetative state (PVS)—a condition marked by basic bodily functions without meaningful consciousness. Her case sparked a landmark legal battle over the right to withdraw life support and became a cornerstone in the formation of modern bioethical standards.

Hospital staff initially refused her parents’ request to remove life support, leading to a lawsuit. Her parents, focusing on her right to a natural death, argued that the respirator constituted extraordinary, painful means to prolong life.

On March 31, 1976, the New Jersey Supreme Court ruled unanimously that her right to privacy allowed her parents to act on her behalf. This allowed removal of the ventilator without civil or criminal liability. archives.law.virginia.edu

Contrary to expectations, Karen continued breathing unaided. She lived for a decade in a vegetative state before passing away from pneumonia. Quinlan weighed 65 lb (29 kg) at the time of her death

Quinlan's case raised questions in moral theology, bioethics, euthanasia, legal guardianship and civil rights. Her case had an impact on medical practices and led to the development of ethics committees in hospitals, nursing homes, and hospices.

Ethical Concerns Surrounding Animals

Animal rights demonstration in Malaysia

Alice C. Linsley

Concern about animal welfare and treatment is a old as Mankind. Early human populations depended on animals for food, hides and for implements that they made from antlers and hoofs. Humans developed a special relationship with some species, especially dogs.

An early animal rights advocate, Arthur Schopenhauer (1788-1860), wrote, “The assumption that animals are without rights and the illusion that our treatment of them has no moral significance is a positively outrageous example of Western crudity and barbarity. Universal compassion is the only guarantee of morality."

In our exploration of the topic we find a range of viewpoints on the value of animals, animals rights, animal protection, and the use of animals in biomedical experimentation. Here are some points upon which there is general agreement.

• Animals have value.
• Animals should be provided with basic necessities for survival: food, water, access to fresh air and protection from dangerous weather conditions.
• Animals used in biomedical research should be treated as feeling beings and their suffering should be minimized.

Peter Singer takes a position that is sometimes described as anti-speciesism. In this article, Theron Bowers MD, takes issue with Singer's position:

Animal right activists often exhibit a stunning insensitivity to human tragedy. Animal liberation is routinely compared to slavery or the women’s rights even though no one would suggest a radical difference between blacks and whites or men and women. Over the last few years, the increasingly shrill People for the Ethical Treatment of Animals (PETA) have compared the victims of the Holocaust to animals kept in warehouses or killed. Whatever sympathy Holocaust on a Plate ad may bring for chickens, can such campaigns do anything but trivialized human suffering?

Such rhetoric may be mere attention-grabbing, hyperbole. However, the race card and Nazi bogeyman also reflect a popular rational basis for animal rights articulated by Princeton University bioethics professor, Peter Singer. Singer argues in Animal Liberation (1973), the Magna Carta of four-legged freedom, that the belief in the inherent dignity of human beings is speciesism and no more rational than racism. Of course the implication is that since racism is evil then the belief in human dignity is also evil.

Singer is not alone in the halls of our academies. Earlier this year, London School of Economics sociology professor Alasdair Cochrane published a paper contending that the concept of human dignity should be removed from bioethics. Cochrane at least avoids dragging in the KKK but attacks the claim that only and all humans have inherent moral worth as “unhelpful and arbitrary.”

If human dignity is only a crazy, cruel fiction, what happens when we dump the myth?

The English philosopher Thomas Hobbes (1588-1679) viewed humans as brutish beasts. To avoid mutual destruction, Hobbes proposed establishing security through cooperation. His solution was a social contract whereby individuals agree to a strong government (monarch) which keeps us from tearing each other apart. Hobbes’ account of humanity emphasizes our animal nature, yet his social contract assumes that humans can reason with one another, something animals cannot do.

Aristotle viewed the human as a political creature whose highest good is to seek his own holistic fulfillment. This too sets the Human apart from other animals.

Hobbes believed that the parent has authority over the child, not because the parent begat the child, but because the child consents to be cared for by the parent. By consenting to parental authority the child receives protection, material provision, training, guidance, nurture and perhaps sufficient bounty to make a marriage. We find in Hobbes’ view the beginnings of children’s rights. Later Jeremy Bentham (1748-1832) adapted this principle in his promotion of animal rights. Instead of regarding animals as inferior to humans because of their inability to reason, Bentham held that the capacity of animals to suffer that gives them the right to equal ethical consideration. Because animals suffer, their welfare is relevant to humans.

Related reading: Why Are Animals Necessary in Biomedical Research?; Human Dignity a Useless Concept?; Woman Cares For 400 Dogs

Areas of Ethical Conversation

Philosophy 301 students will find this glossary of Ethics helpful.

Bioethics: concerns the ethical controversies brought about by advances in biology and medicine. Public attention was drawn to these questions by abuses of human subjects in biomedical experiments, especially during the Second World War, but with recent advances in bio-technology, bioethics has become a fast-growing academic and professional area of inquiry. Issues include consideration of cloning, stem cell research, transplant trade, genetically modified food, human genetic engineering, genomics, infertility treatment, etc.

Business Ethics: examines ethical principles and moral or ethical problems that can arise in a business environment. This includes Corporate Social Responsibility, a concept whereby organizations consider the interests of society by taking responsibility for the impact of their activities and operations on customers, employees, shareholders, communities and the environment, over and above the statutory obligation to comply with legislation.

Environmental Ethics: considers the ethical relationship between human beings and the natural environment. It addresses questions like "Should we continue to clear cut forests for the sake of human consumption?", :Should we continue to make gasoline powered vehicles, depleting fossil fuel resources while the technology exists to create zero-emission vehicles?", :What environmental obligations do we need to keep for future generations?", "Is it right for humans to knowingly cause the extinction of a species for the (perceived or real) convenience of humanity?"

Legal Ethics: an ethical code governing the conduct of people engaged in the practice of law. Model rules usually address the client-lawyer relationship, duties of a lawyer as advocate in adversary proceedings, dealings with persons other than clients, law firms and associations, public service, advertising and maintaining the integrity of the profession. Respect of client confidences, truthfulness in statements to others, and professional independence are some of the defining features of legal ethics.

Media Ethics: deals with the specific ethical principles and standards of media in general, including the ethical issues relating to journalism, advertising and marketing, and entertainment media.

Medical Ethics: the study of moral values and judgments as they apply to medicine. Historically, Western medical ethics may be traced to guidelines on the duty of physicians in antiquity, such as the Hippocratic Oath (at its simplest, "to practice and prescribe to the best of my ability for the good of my patients, and to try to avoid harming them"), and early rabbinic, Muslim and Christian teachings. Six of the values that commonly apply to medical ethics discussions are: Beneficence (a practitioner should act in the best interest of the patient, Non-maleficence ("first, do no harm"), Autonomy (the patient has the right to refuse or choose their treatment), Justice (concerning the distribution of scarce health resources, and the decision of who gets what treatment), Dignity (both the patient and the practitioner have the right to dignity), Honesty (truthfulness and respect for the concept of informed consent).

Information Ethics: investigates the ethical issues arising from the development and application of computers and information technologies. It is concerned with issues like the privacy of information, whether artificial agents may be moral, cyber ethics, how to behave in the infosphere, and ownership and copyright problems arising from the creation, collection, recording, distribution, processing, etc, of information.

Virtue Ethics (or Virtue Theory) is an approach to Ethics that emphasizes an individual's character as the key element of ethical thinking, rather than rules about the acts themselves (Deontology) or their consequences (Consequentialism).

Vulnerability and Human Dependency

Are vulnerabilities desirable, even necessary, to our moral identity as humans?

There has been growing interest among ethicists in the theme of vulnerability. Some have gone as far as to suggest that vulnerability could serve as a new principle in bioethics. In a recent edition of the journal Theoretical Medicine and Bioethics, a number of leading bioethicists explored the topic of ‘human vulnerability in medical contexts’. This recent journal edition – a first among any of the leading bioethics journals –provides significant insight into the notion of vulnerability and its relevance to contemporary clinical practice. Xavier Symons, the deputy editor of Bioedge, recently spoke with guest editor Stephen Matthews about the key themes discussed.

Stephen Matthews is a senior research fellow at the Plunkett Centre for Ethics and a member of the Centre for Moral Philosophy and Applied Ethics at Australian Catholic University. Steve co-edited the special edition with Bernadette Tobin, Director of the Plunkett Centre for Ethics.

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Xavier Symons: You contend that vulnerability need not always be seen as “an obstacle or pathology to be removed”. Do you think this idea is relevant to the treatment vs. enhancement distinction in medicine?

Steve Matthews: Yes, it’s absolutely relevant. An implicit assumption of those whose moral position is quite permissive of the technologies of human enhancement is a kind of perfectionism, or at least a maximising kind of attitude that can tend to swamp moral contemplation regarding vulnerable traits, the possession of which is not undesirable.

This is the idea expressed in John Quilter’s very thoughtful piece, and I take it that something like this is being expressed for the medical context in the article by Wendy Rogers and Mary Walker.

Actually there is a background fundamental question to all of this and it’s about whether certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. If we think there are such traits, this would inform the treatment vs enhancement question from the outset. It may be that we possess such traits and we should be concerned not to enhance ourselves to eliminate them. It may be, also, that we should not be jumping in to treatment occasioned by the slightest deviation from the path of a happy life.

Read it all here: Vulnerability in medical contexts: An interview with Steve Matthews

Law and Biosciences: A new journal

Three top US universities have combined with Oxford University Press (OUP) to start the world’s first journal devoted to advances at the intersection between law and bioethics. The Journal of Law and the Biosciences, an open access journal co-edited by academics from Duke, Harvard and Stanford Universities, aims to foster an interdisciplinary conversation between lawyers, bio-scientists, philosophers and other experts on controversial topics in bio-law. It will focus on cutting edge issues such as neurolaw and ethics, human enhancement, mass genetic testing and predictive analytics.

In an interview on the OUP blog, co-editor I. Glen Cohen of Harvard spoke of his excitement for the project:

“We are seeing major developments in genomics in neuroscience, in patent law, and in health care. We want to be at the forefront of this, and we think that a peer-reviewed journal led by the leading research institutions working in this area in the US is the way to go”.

The first issue of the journal contains articles dealing with international research ethics frameworks, informed consent in genetic testing, human enhancement, and the commercialisation of blood banks.

Source: BioEdge

USA's Role in Japanese Vivisection Atrocities

US scientists were “accomplices after the fact” in Japanese doctors’ war crimes
by Michael Cook

All of contemporary bioethics springs from the Nuremberg Doctors Trial in 1947. Seven Nazi doctors and officials were hanged and nine received severe prison sentences for performing experiments on an estimated 25,000 prisoners in concentration camps without their consent. Only about 1,200 died but many were maimed and psychologically scarred.

So did the US do to the hundreds of Japanese medical personnel who experimented on Chinese civilians and prisoners of war of many nationalities, including Chinese, Koreans, Russians, Australians, and Americans? They killed an estimated 3,000 people in the infamous Unit 731 in Harbin, in northeastern China before and during World War II – plus tens of thousands of civilians when they field-tested germ warfare. Many of the doctors were academics from Japan's leading medical schools.

Nothing.

Well, almost nothing. Twelve doctors were tried and found guilty by the Soviets in the Khabarovsk War Crime Trials in 1949, but they were all repatriated in 1956. American authorities dismissed the trials as Soviet propaganda. Many of the doctors in Unit 731 went on to successful careers in Japan after the War. The commander of the unit, Shirō Ishii, lived in relative obscurity but his successor late in the war, Kitano Masaji, became head of one of Japan’s leading pharmaceutical companies.

How did the Japanese doctors escape justice?

A fascinating answer appears in the Cambridge Quarterly of Healthcare Ethics. The broad outline of the story has been well documented, even if it is not widely known. To cut a long story short, the Americans struck a deal with the doctors. They traded immunity from prosecution for access to scientific information from the ghastly Japanese experiments – many of which are too grim to detail here. (If you have the stomach for it, a remorseful doctor describes, at the age of 90, some of his vivisection experiments in an article in the Japan Times.)

Read it all here.

Embryo Selection: Some ethical concerns

By Amy Julia Becker

It sounds pretty basic. A lovely young couple wants children, and they want those children to prosper and grow. They want to do as much as they reasonably can to ensure that those children have good, full lives. Happy lives. Lives that are as free from suffering and pain as possible. The problem is that they run the risk of bearing children with a gene that will probably cause a slow and painful death, albeit a death many decades in the future.

What should they do? Never have children? Adopt? Take the risk and conceive, come what may? Take the risk, conceive, and then terminate the pregnancy if the gene is present? Or try preimplantation genetic diagnosis, which involves creating embryos and testing them for the problematic gene and only implanting embryos free of the gene?

In the case of the Kolinsky family, as Gina Kolata reports for the New York Times, they chose preimplantation genetic diagnosis (PGD) in order to be certain that none of their children inherited their mother’s rare, painful, fatal neurological disease. As Kolata reports, the use of genetic testing and PGD is on the rise, and so the ethical questions associated with these tests are all the more relevant to all of us. As she writes:

Ethicists are divided about use of the method.

Janet Malek, a bioethicist at the Brody School of Medicine at East Carolina University, said that people who carry a gene like GSS have a moral duty to use preimplantation diagnosis — if they can afford it — to spare the next generation.

“If there is a paradigm example in which a parent can have an obligation to use this technology, this is it,” she said.

But David Wasserman, an ethicist at Yeshiva University and consultant to the department of bioethics at the National Institutes of Health, says there is no obligation to use it for diseases that do not start until adulthood. Eliminating embryos with such genes is essentially saying someone like Ms. Kalinsky should never have been born, he said.

I should say here and now that technologies such as PGD concern me for a host of ethical reasons, including the fact that we as a culture tend to let ethics follow technology rather than the other way around. PGD provides yet another example of a technology that people are using in the midst of an ongoing debate about the potential personal and social repercussions.

Read it all here.

Professionals and Social Media Conduct

As a teacher I never discuss my students on Facebook. I don't even friend students. There is a professional boundary here that needs to be upheld.

Imagine a doctor who rants about a patient on Facebook.  That is very unprofessional behavior, and likely to draw heavy criticism, even calls for the doctor's resignation.

Such was the case earlier this year when a 33-year-old obstetrician in New York was fed up with one of her patients. She vented to her 470 friends on her Facebook page: "So I have a patient who has chosen to either no-show or be late (sometimes hours) for all of her prenatal visits, ultrasounds and NSTs. She is now 3 hours late for her induction. May I show up late to her delivery?"

This and similar incidents raise the question: Do professionals need a Code of Ethical Conduct for social media? That topic is addressed in this recent BioEthics article:


An increasing area of concern for bioethicists is doctor's use of social media. Every month more medical boards are releasing Codes of Conduct for practitioners - the latest example is Rhode Island.

In a recent NBC article influential bioethicist Arthur Caplan considered this issue, focusing particularly on the use of social media to verify the truth of patient statements.

Caplan cited a prospective liver transplant recipient who was refused the operation after photos of him intoxicated were discovered on Twitter.

Many see doctors' use of social media as a violation of patient privacy. Others believe it can in some cases be ethically permissible. Caplan argues that any ethical framework needs to preserve doctor-patient trust: "If they are going to continue to trust one another then we need to recalculate existing notions of medical privacy and confidentiality to fit an Internet world where there is not much of either."

There are other concerns that need to be addressed by any adequate social media code of conduct, including the preservation of a professional distance between patients and doctors and the caution of doctors in publishing any details - even vague details - about patients in their practice.

USA: Absence of Stem Cell Donors Consent

After President Obama reversed his predecessor's stand on embryo research in 2009 shortly after his inauguration, the battles seemed over. The main ethical consideration was ensuring that the donors of embryos and gametes gave their informed consent to research.

However, a review of human embryonic stem cell lines in the US has raised concerns about informed consent amongst gamete donors. Some of the stem cell lines, though approved by the National Institutes of Health, may have involved gametes from donors who had not consented. The review, conducted by academics from Rockfeller University and The Hastings Center, a bioethics think tank, identified 30 lines of approved stem cells with unknown provenance. These cells may very well have come from non-consenting gamete donors. In addition to this, the providers of 19 lines did not respond to requests for consent information.

The authors of the review criticised American IVF clinics, from which many of the embryos were sourced, for failing to obtain consent from gamete donors: "just 30% of oocyte donor consent forms in surveyed US IVF clinics mention the possibility that resultant embryos might be donated to research, and only 8% mention donation to hESC research specifically" the authors of the review stated in a letter to Cell Stem Cell.

They also stressed that "information about the provenance of the hESC lines should be public and readily available", particularly for the hESC research community. They conclude:

"With such rapid advances occurring in stem cell research, it is critical that consent forms for donation of gametes to IVF refer not just to the possibility of future research use, but also to derivation of hESCs specifically. Also, information about the provenance of the hESC lines should be public and readily available. The hESC research community will be best served if their essential research materials--gametes and embryos --are donated by individuals who knowingly and willingly agree to the use of those materials in hESC research."


Related reading:  Absence of Gamete Donor Consent; Some Stem Cell Lines Off Limits; Whistleblower Exposes Soo Kyung's Stem cell Research; Mouse Stem Cells for Retina Repair

France to Consider Euthanasia Legislation

The French government has announced that it will introduce legislation allowing assisted suicide and some forms of euthanasia. A report by the former head of the national bioethics commission, Didier Sicard, was given to President François Hollande. Legislation could be presented to the National Assembly as early as June.

"The existing legislation does not meet the legitimate concerns expressed by people who are gravely and incurably ill," Hollande told the media this week.

Sicard professes to be a foe of legalised euthanasia. However, his three main proposals do involve ending life without consent. He says that death should be "accelerated" if patients ask for it or if they have made an advance directive. In a second scenario, doctors could withdraw nutrition and hydration at the request of relatives of an unconscious person. And third, doctors could withdraw nutrition and hydration from persons in a permanent vegetative state.

Chinese Generate Brain Cells From Urine

Writing in the journal Nature Methods, scientists from Guangzhou Institutes of Biomedicine and Health, part of the Chinese Academy of Sciences, said that they were able to reprogram the urine cells to become neural cells without passing through pluripotency. They did this with a clever technique which did not involve shuttling genes from genetically engineered viruses into the target cell. This seems to result in harmful mutations.

The report states that "eprogram epithelial-like cells from human urine into NPCs (hUiNPCs). These transgene-free hUiNPCs can self-renew and can differentiate into multiple functional neuronal subtypes and glial cells in vitro. Although functional in vivo analysis is still needed, we report that the cells survive and differentiate upon transplant into newborn rat brain.

Is Peter Singer Joining the Transhumanism Movement?

Princeton bioethicist Peter Singer has hopped onto the anti-ageing bandwagon. Writing in Project Syndicate, he says that he has been convinced by Aubrey de Grey, the world's most prominent advocate of anti-aging research. De Grey contends that since 90% of deaths in developed countries are ultimately due to ageing, ageing - not cancer or diabetes and cardiac disease - is the real enemy.

De Grey believes that even modest progress in this area over the coming decade could lead to a dramatic extension of the human lifespan. All we need to do is reach what he calls “longevity escape velocity” – that is, the point at which we can extend life sufficiently to allow time for further scientific progress to permit additional extensions, and thus further progress and greater longevity. Speaking recently at Princeton University, de Grey said: “We don’t know how old the first person who will live to 150 is today, but the first person to live to 1,000 is almost certainly less than 20 years younger.”

Singer has said, "De Grey might be mistaken, but if there is only a small chance that he is right, the huge pay-offs make anti-aging research a better bet than areas of medical research that are currently far better funded."

There are ethical questions here. Is it better to spend scarce research money on saving poor people with short life expectancies from dread diseases or on making rich people in developed countries healthier and longer-lived? As Singer points out, "If we discover how to slow aging, we might have a world in which the poor majority must face death at a time when members of the rich minority are only one-tenth of the way through their expected lifespans". However, de Grey seems to have persuaded him that extremely long life spans are imminent. As the science develops, its price will plummet and the poor will be able to share in the benefits of living longer, possibly as long as 1,000 years.

Greater longevity would bring social benefits. All over the world, populations are ageing and the proportion of younger, tax-paying workers is shrinking. If we have more years of youthful energy, this could help to alleviate the demographic problem.

Singer also poses an interesting ethical question about the future of a world where people can live hundreds of years:

"The population objection raises a deeper philosophical question. If our planet has a finite capacity to support human life, is it better to have fewer people living longer lives, or more people living shorter lives? One reason for thinking it better to have fewer people living longer lives is that only those who are born know what death deprives them of; those who do not exist cannot know what they are missing."

Related reading:  Max Moore's Transhumanism

Controversy Over Newborn Blood Samples

Blood samples left over from newborn screening tests are a genetic treasure trove which should be available to researchers, argue bioethicists in the journal Science Translational Medicine.

Nearly 4 million American newborns undergo mandatory screening every year, and privacy-related and ethical concerns about what happens to the remaining blood spots could hamper research.

The use of these residual dried blood samples (DBS) has been controversial, as parents in Minnesota and Texas have sued their states for retaining them without parental permission.

The settlement in the Texas suit resulted in the destruction of 5.3 million archived blood samples. The Minnesota Supreme Court ruled that informed consent will be required for the blood samples to be retained for research. Minnesota now plans to start destroying leftover samples when newborn screening is completed.

This narrow view of privacy is hampering research, the bioethicists complain. "The potential value to biomedical research for improving both public health and individual health must be part of the public discussion about what should happen to residual dried blood samples from newborn screening," says Michelle Huckaby Lewis, of the Johns Hopkins Berman Institute of Bioethics.

"The research community must advocate for policies that support the retention of these samples and their use in biomedical research," Lewis said. "We should be the generation that recognizes the potential value of these samples and commits to developing them as a resource to promote public and individual health. The scientific community has a responsibility to the nation and its citizens to use these resources ethically, but also to the fullest extent possible to improve the health of our citizenry." ~ GenomeWeb Daily News, Nov 8

Blood Donors Needed

The American Red Cross is asking people to please call 1-800-RED-CROSS or visit us at redcrossblood.org to find a way to donate if they can," said Stephanie Millian, Red Cross director of biomedical communications. "We need people's help."

Oppressive heat and power outages created by recent storms in the East and Midwest cut blood donations, which were already low this summer. In June there was a nationwide shortfall, with donations down more than 10% across the country.

Please consider donating.

Whistleblower Exposes Soo-kyung's Stem Cell Research

Korean scientists will need more than a stiff drink to recover their joie de vivre after stem cell researcher at Seoul National University admitted that she manipulated data for articles published in an international journal.

Veterinary researcher Kang Soo-kyung was pinged by an anonymous whistleblower who sent the editors of ten journals a 70-slide Powerpoint report on her irregularities. On May 19 Antioxidants & Redox Signaling announced that four of her papers were being retracted, including two in the latest issue. Kang ‘fessed up immediately. “In response to allegations brought forth by a reader of this Journal, I take full responsibility as corresponding author and accept that some of the data presented is not accurate. I retract the publication in its entirety from scientific literature,” she said in a statement.

However, she also insinuated that the whistleblower was driven by malice. “About 80 percent of the evidence used against me is false,” she said. There could be more unsettling revelations, as the whistleblower claims that Kang has been cheating since 2006. “If we don’t stop this author now, no one can prove fabrication later on,” he wrote. A cloud now hangs over more than a dozen of her studies.

Poor oversight may have contributed to the problem. Kang was hauled before a university committee two years ago after “mistakes” surfaced in a paper for the International Journal of Cancer. Some Korean scientists blame intense pressure and competition. “The school and the government demand their scholars show visible progress in their projects on yearly basis. They are all stressed. What she did is unacceptable but I can see where her deeds came from,” one scientist commented on a Korean university blog.

The latest incident is a painful reminder that one of the worst scientific frauds of the past century happened in the same field at the same university by another veterinary researcher. In 2005, after being feted as a national treasure for being the first in the world to clone human embryos and create embryonic stem cells, Hwang Woo Suk turned out to be a fraud. The incident severely tarnished Korea’s scientific reputation. This new imbroglio will do nothing to shine it up. ~ Korea Times, May 29; Korean Herald, May 31

Related reading:  South Korea Ramps Up Stem Cell Research

Israeli Children Sue for Wrongful Life

Israeli children with birth defects increasingly sue medical authorities for allowing them to be born. The growth in "wrongful life" lawsuits, which the medical profession estimates at 600 since the first case in 1987, has prompted an Israeli government investigation. Medical ethicists told New Scientist that these cases raise serious ethical concerns - not least about the value of disabled people's lives - and spark fears that medical professionals will become overly cautious in their diagnostic tests, causing healthy fetuses to be aborted. One ethicist alleged that lawyers looking for work are trawling communities with high rates of genetic disease and inbreeding.


"I find it very difficult to understand how parents can go on the witness stand and tell their children 'it would have better for you not to have been born'," says Rabbi Avraham Steinberg, of the Hebrew University-Hadassah Medical School in Jerusalem. "What are the psychological effects on the children?" The current trend in Israel is that the children sue for wrongful life, which carries a big award designed to compensate for a lifetime of hardship.

The issue is aggravated in Israel by a strong pro-genetic testing culture. "There is an entire system fuelled by money and the quest for the perfect baby," says Carmel Shalev, of the University of Haifa in Israel. "Everyone buys in to it - parents, doctors and labs. Parents want healthy babies, doctors encourage them to get tested, and some genetic tests are being marketed too early. Genetic testing has enormous benefits but it is overused and misused."

More pregnancy scans are performed in Israel than in other Western countries, including the United States, Japan and Germany. Israel is also liberal with regard to late-term abortion, when the fetus is viable. ~ New Scientist, Oct 26; Haaretz, Oct 18
 

US Violation of Human Dignity and Ethics

US researchers violated ethical boundaries when they deliberately infected Guatemalan prisoners, mental health patients and prostitutes with sexually transmitted diseases in a 1940s research project, a presidential commission concluded on Tuesday.

When the awful experiments came to light in October 2010, President Barack Obama entrusted the President's Commission for the Study of Bioethical Issues with investigating the matter. Amy Gutmann, chairwoman of the commission and president of the University of Pennsylvania, says it was no accident that the research was performed in Guatemala. "Some of the people who were involved in this experiment explicitly said, 'We could not do this in our own country'," she said. "It was a foreign population that was seen as ethnically, racially, nationally different."

The work clearly opposed ethical standards of the time, according to Nelson Michael, director of the US Military HIV Research Program. "I'm not aware of any standards that would have said, 'it's ok to go offshore to do this kind of research'," he said. "They did it because they found a doorway that they found darkened and they went through it." STDs, including gonorrhea and syphilis, were among the biggest public health threats at the time. It was estimated that 20% of people living in psychiatric institutions were there because of the neurological effects of late-stage syphilis. The researchers in the Guatemalan study were looking for a way to prevent such diseases from spreading.

The commission has concluded that despite that sense of urgency, the Guatemala studies were poorly designed, poorly executed and entirely unethical. John Arras of the University of Virginia said he initially struggled with the decision over whether the researchers should be blamed for the ethical offenses. However, Arras said the details of the experiments dispelled doubts.

In one case, a patient named Berta in a psychiatric ward was injected with syphilis and not treated until 3 months after her infection. Soon after, lead researcher John Cutler, said she was about to die. The same day, he put gonorrhoeal pus from another patient into both of her eyes, her urethra and her rectum, and reinfected her with syphilis. Days later, her eyes were filled with pus from gonorrhea and she was bleeding from her urethra. She died six months later. "I would submit that this kind of case cannot be waved away by even the most acute awareness of fluctuation in medical ethics standards of the time," Arras said.

The commission discovered evidence of 83 deaths, but could not determine the extent to which the deaths were likely to be related to the experiments. It is still writing up its conclusions, and plans to issue a report on the historical study to Obama in September. Following an inquiry into the adequacy of current policies to protect human research subjects, it will also write a second report by the end of the year. ~ Nature News, Aug 30
 

Egg Extraction from Dead Israeli Raises Questions

An Israeli court has allowed the parents of a dead 17-year-old woman to remove her eggs for future use. This is the first case of its kind in Israel, possibly the first in the world. Hen Aida Ayish, was critically injured in a car accident a fortnight ago. She was taken to Meir Hospital in Kfar Sava, and a week later doctors declared her brain-dead.

With the consent of Ayish's family her other organs saved the lives of four patients. But the family's second request was denied. Bizarrely, medical personnel said that the family wanted the eggs to be fertilised with the sperm of another dead body. This definitely would have been a world first: a baby whose father and mother both died before she was even conceived. The hospital declined.

Ayish's family did not explain why they sought the egg extraction. Her eggs were extracted and frozen at the hospital. The court has only allowed the extraction of the eggs, but their future is undecided. According to guidelines issued by the attorney general in 2003, the use of sperm for a body is only permissible when used to fertilised the widow of the deceased. Parents who seek to use the sperm from a body must gain private permission in court. ~ Haaretz, Aug 7

 

First Human Test of Stem Cell Therapy

A Menlo Park biotech firm said Friday that federal regulators will let it proceed with the world's first human test of a treatment made from embryonic stem cells, a much-anticipated but controversial study of patients with spinal cord injuries that had been placed on hold for nearly a year because of safety concerns.

If the treatment from Geron works, it "would be revolutionary," said Dr. Richard Fessler, a neurological surgeon at Northwestern University, who will lead the study of a stem-cell treatment designed to be injected into patients with spinal injuries to restore their motor function. "The therapy would provide a viable treatment option for thousands of patients who suffer severe spinal cord injuries each year."

Geron has spent 15 years and more than $150 million to develop the treatment, and "getting it into a clinical trial, just by itself, is a big deal," added Fessler, who has no financial ties to the company.

Many people hope that human embryonic stem cells, which can turn into any type of tissue in the body, could prove useful for everything from generating organs for transplants to helping test drugs on numerous diseases. But because the cells are derived from discarded 3- to-5-day-old embryos, their use by researchers has sparked ethical concerns and a highly contentious national debate.

The Food and Drug Administration had put the study on hold last year after a few animals the company was testing with its treatment.

Read more here.

Harvard: Breakthrough in Somatic Cell Reprogramming

Scientists at Harvard Medical School have developed an even better way of producing alternatives to human embryonic stem cells (hESCs). The new technique, which appears to be a huge improvement over induced pluripotent stem (iPS) cells, is being described as a major advance.


While iPS cells are very promising, they have significant drawbacks. The process for generating them is very inefficient and they can cause cancer. The new method, developed by a team headed by Derrick Rossi and published in the journal Cell Stem Cell, does not require risky genetic modification and holds great promise for making the reprogramming process more therapeutically relevant. Synthetic modified messenger RNA molecules encode the appropriate proteins but without integrating into the cell's DNA.

"All I can say is 'wow' - this is a game changer," said Robert Lanza, a stem cell researcher at Advanced Cell Technology told the Washington Post. "It would solve some of the most important problems in the field."

"Our technology represents a safe, efficient strategy for somatic cell reprogramming and directing cell fate that has wide ranging applicability for basic research, disease modeling and regenerative medicine," says Dr Rossi. "We believe that our approach has the potential to become a major and perhaps even central enabling technology for cell-based therapies."

What are the ethical implications?

Richard M. Doerflinger of the US Conference of Catholic Bishops told the Post: "With each new study it becomes more and more implausible to claim that scientists must rely on destruction of human embryos to achieve rapid progress in regenerative medicine."

However, the director of the National Institutes of Health, Francis S. Collins, insisted that research on hESCs must continue as they are a gold standard. "Previous research has shown that iPS cells retain some memory of their tissue of origin, which may have important implications for their use in therapeutics," he said. "To explore these important potential differences, iPS research must continue to be conducted side by side with human embryonic cell research." ~ Eurekalert, Sept 30, Harvard, Sept 30