Top Bioethics News Stories - Fall 2014

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“Air Thick with Self-Congratulation as Quebec Votes to Legalize Euthanasia”

by Graeme Hamilton, National Post, June 5, 2014

AsQuebec’s National Assembly voted Thursday to become the first North American jurisdiction to legalize euthanasia, the air was thick with self-congratulation. ‘I want to congratulate ourselves as parliamentarians,’ PQMNA Carole Poirier said before the vote. ‘Quebec is a beautiful society, and again today Quebec has just shown that we are really, really a different society.’ (http://tinyurl.com/qhpcqbt)

“Three European Courts Grapple with End-of-Life Dilemmas”

by Tom Henehan, Reuters,June 25, 2014

ThreeEuropean courts stepped carefully around delicate end-of-life issues onWednesday, with one rejecting assisted suicide, another delaying it and a third acquitting a doctor from charges he murdered dying patients. The varied rulings by Britain’s Supreme Court, the European Court of Human Rights and a regionalFrench court reflected the difficulty of drawing a clear legal line between aiding terminal patients to die in peace and committing murder. (http://tinyurl.com/qd6bnbw)

Physician-assisted suicide has been heavily covered inthe media this past summer as several countries voted on laws permitting some form of assisted suicide. In response to Great Britain’s discussion on whether to legalize physician-assisted suicide, the British Medical Journal surprisingly called for legalizing assisted suicide, citing that respect for autonomy rather than the ideas espoused in the Hippocratic Oath are now more important in medical ethics. Additionally, a paper in the journal Law,Ethics, and Medicine provided statistics on suicide tourism to Switzerland, which has been on the rise over the past ten years. Tourists come from countries that do not allow physician-assisted suicide to take advantage ofSwitzerland’s hazy laws on the issue.

“Paralyzed Man in Robotic Body Suit Will Kick Off World Cup”

by Noah Rayman, Time,June 12, 2014

A paraplegic man in a state of the art brain-controlled body suit will make the first kick of the World Cup on Thursday in front of 1 billion people. Miguel Nicolelis, a Brazilian neuroscientist at Duke University, led a team of 156researchers to create an exoskeleton that could enable people who are paralyzed to walk, and the technology will be displayed in action during the World Cup’s opening ceremonies ahead of the first match, Brazil vs. Croatia, in Sao Paulo.(http://tinyurl.com/n96hqpg)

Several networks were criticized for not covering the traditional first kick of the World Cup in favor of more entertaining acts.However, that first kick is of interest to bioethicists because it was performed by Juliano Pinto, a 29-year-old man who is paralyzed from the waist down. Juliano was wearing a robotic exoskeleton that is part of research being conducted for the Walk Again Project. Other World Cup bioethics news includedAngel Di Maria, winger for Argentina, undergoing stem cell treatment for a torn right hamstring.

“Supreme Court Rejects Contraceptive Mandate for Some Corporations”

by Adam Liptak, The New York Times, June 30, 2014

TheSupreme Court ruled on Monday that requiring family-owned corporations to pay for insurance coverage for contraception under the Affordable Care Act violated a federal law protecting religious freedom. It was, the dissent said, “a decision of startling breadth.” The 5-to-4 ruling, which applied to two companies owned by Christian families, opened the door to challenges from other corporations over laws that they claim violate their religious liberty. (http://tinyurl.com/n2ytrau)

A preventive care regulation developed as part of the implementation of the Affordable Care Act specifies that employers cover contraceptives in their health insurance, including some contraceptives that may act as an abortifacient. The Supreme Courte ruled in favor of tightly held corporations like Hobby Lobby and Conestoga Wood that have a religious objection to such coverage.The Obama administration has since revised the an opt-out clause to the contraceptive mandate that would allow tightly held corporations such as HobbyLobby to exclude coverage of certain contraceptives on the ground of religious objections.In August, the administration drafted a new policy allowing employees of such companies to receive coverage for contraceptives directly through the insurance company.

“Papers on ‘Stress-Induced’ Stem Cells Are Retracted”

by David Cyranoski, Nature, July 2, 2014

Nature today retracted two controversial papers on stem cells that it published in January. The retractions — agreed toby all of the co-authors — come at the end of a whirlwind five months during which various errors were spotted in the papers, attempts to replicate the experiments failed, the lead author was found guilty of misconduct, and the centre where she is employed was threatened with dismantlement. The retraction notice includes a handful of problems with the papers that had not been previously considered by institutional investigation teams. (http://tinyurl.com/ngwdflz)

The STAP stem cell saga, which began with the publication of two papers in January, concluded in July with the retraction of those papers after lead author Haruko Obokata and co-author Charles Vacanti finally consented to retraction. Investigators found several problems with the papers, including doctored and duplicated images. Obokata was charged with misconduct by her institution, but still stands by her work. Vacanti has since stepped down as chair of the anesthesiology department at Brigham and Women’sHospital. In August, one of the paper co-authors, Yoshiki Sasai, committed suicide. In his suicide note, he tragically blamed the media attention from the retracted papers for his distress.

“Vials of Smallpox Virus Found in Unapproved Maryland Lab”

by Sydney Lupkin, ABCNews, July 8, 2014

Vials of the virus that causes smallpox were found in a National Institutes of Health research building that was unequipped and unapproved to handle the deadly pathogen, according to the Centers for Disease Control and Prevention. Because it’s so infectious, the smallpox virus is considered a bioterrorism threat and is only permitted in two labs in the world: One at the CDC’s Atlanta headquarters and another at the VECTOR Institute in Russia. (http://tinyurl.com/n77vnxn)

Vials containing the smallpox virus were found in a cold storage room in an unapproved NIH laboratory. This sparked an investigation into government labs. Investigators eventually found six more vials of dangerous pathogens that were improperly stored and reported in other NIHand FDA labs. Furthermore, investigations into the CDC’s bioterrorism labs found improper storage and handling of anthrax, leading to a government investigation and the eventual resignation of the head of the CDC’sBioterrorism Rapid Response and Advanced Technology lab.

“Europe Moves to Outlaw Organ Trafficking Worldwide”

by Matthew Robertson, Epoch Times,July 17, 2014

An official European representative body has promulgated a new convention outlawing the trafficking in human organs, calling on all countries to become signatories to it and criminalize the practice and punish offenders. The convention, called the ‘Council of Europe Convention against Trafficking inHuman Organs’ was adopted by the Council of Europe’s Committee of Ministers onJuly 9. The Council of Europe is composed of 47 member states; it does not make binding laws, but provides policy guidelines and promotes good governance. (http://tinyurl.com/md3ots3)

While it is difficult to determine how many illegal organ trafficking rings there are, news headlines this summer have reported illegal organ trafficking in Nepal, India, Kosovo, and China. China, especially, is a difficult dilemma because it is the most populous country in the world, and therefore, in need of organs for donation, but has few rules governing the practice. For years there have been several reports of Chinese authorities obtaining organs from prisoners and favoring rich foreigners in distributing those organs.

“More than 100 Genetic Locations Found to Be Linked to Schizophrenia”

by Sara Reardon, Scientific American, July 22, 2014

Researchers seeking to unpick the complex genetic basis of mental disorders such as schizophrenia have taken a huge step towards their goal. A paper published in Nature this week ties 108 genetic locations to schizophrenia — most for the first time. The encouraging results come on the same day as a US$650-million donation to expand research into psychiatric conditions. (http://tinyurl.com/mpwoe3z)

A report on the genetic markers for schizophrenia and another report on the genetic markers for autism were produced by thePsychiatric Genomics Consortium. They examined large genetic samples to find patterns in people with a psychiatric disease to compare with those who do not have the disease. For the schizophrenia study, samples were pooled from 150,000people, in which 36,989 were diagnosed with this psychiatric condition.Researchers found 108 genetic locations that seem to coincide with people with schizophrenia. Bioethics issues from this research include among other considerations privacy issues regarding genetic data along with potential discrimination or eugenic practices from finding genetic markers for a mental illness.

“IVF Technique that Tests Embryos for Genetic Disorders Has First Success”

by Ian Sample, The Guardian, July 27, 2014

Doctors in London have reported the first pregnancy in Europe from a new IVF procedure that checks embryos for genetic disorders before they are implanted. The technique allows doctors to select embryos that are free of dangerous mutations carried by one or both parents even if the precise nature of the genetic defect is unknown. (http://tinyurl.com/ovuobd5)

In both the UK and the U.S., embryos created by IVF were successfully screened using genetic sequencing techniques. In the UK case, the doctors looked at a gene from one of the parents that codes for a type of muscular dystrophy that they did not want to pass on to their child. The doctors were able to remove a cell from an early embryo and screen it before implantation. Similarly, doctors in the U.S. sequenced the genome of several early embryos before implantation in an effort to select the “healthiest” looking embryo, ensuring a higher chance of a successful pregnancy. This technology hasthe potential to be used for eugenic purposes and has already been used to select embryos that do not have chromosomal abnormalities, such as Down syndrome.

“The Drug that’s Forcing America’s Most Important – and Uncomfortable – Health-Care Debate”

by Jason Millman, Washington Post, July 24, 2014

Months before Gilead Sciences’ breakthrough hepatitis C treatment hit the market,Oregon Medicaid official Tom Burns started worrying about how the state could afford to cover every enrollee infected with the disease. He figured the cost might even reach $36,000 per patient. Then the price for the drug was released last December: $84,000 for a 12-week treatment course. At that price, the state would have to spend $360 million to provide its Medicaid beneficiaries with the drug called Sovaldi, just slightly less than the $377 million the OregonMedicaid program spent on all prescription drugs for about 600,000 members in2013. (http://tinyurl.com/qej6of2)

The high price of Sovaldi®, a drug that is more effective in treating hepatitis C than other drugs on the market, has caused a debate about the cost of research for specialty drugs balanced with access to people who require the drug in order to live. Older methods for combatting hepatitis Care quite burdensome and only 50% effective, while such treatment when combined with Sovaldi® increases to 90% effectiveness. However, with an $84,000 price tag states are unable to subsidize the drug.

“Thai Surrogate Mother of Down Syndrome Baby Abandoned by Australian Parents Says She Cannot Afford Baby Gammy’s Medical Treatment”

by ABC News (Australia), August 2,2014

TheThai surrogate mother of a Down syndrome baby who was abandoned by his Australian parents says she has been left to provide for the child who also suffers from a life-threatening heart condition. In an exclusive interview with the ABC’sSamantha Hawley, Gammy’s mother Pattaramon Chanbua described how she loves the baby boy as if he was her own, but cannot afford the medical treatment he needs. (http://tinyurl.com/knxumtu)

The baby Gammy case is a tragic example of an international surrogacy arrangement gone awry. An Australian couple hired a surrogate from Thailand to birth their genetic children. The surrogate became pregnant with twins, one of whom was found to have Down syndrome. The parents would have had her abort the child, but were informed of the Down syndrome diagnosis too late into the pregnancy. They ended up taking the healthy baby, leaving the child with Down syndrome with the surrogate. Later inquiries revealed that the father was a convicted pedophile as well as allegations that the surrogate manipulated the parents. This case has led to an overhaul on Thailand’s surrogacy laws and has exposed the dark underside of international gestational surrogacy.