Top Bioethics News Stories - Summer 2014

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“FDA Warns Maker of Genetic-Testing Kit”

by Brady Dennis, Washington Post, November 25, 2013

The Food and Drug Administration has ordered the maker of a popular genetic-testing kit to halt sales of its heavily marketed product, saying the mail-order tests haven’t been proven effective and could dangerously mislead people about their health. (http:// tinyurl.com/lqjmz9p)

“I Had My DNA Picture Taken, With Varying Results”

by Kira Peikoff, New York Times, December 30, 2013

. . . So I decided to read the tea leaves of my DNA. I reasoned that it was worth learning painful information if it might help me avert future illness. Like others, I turned to genetic testing, but I wondered if I could trust the nascent field to give me reliable results. (http://tinyurl.com/ mrmrwsm)

While 23andMe has been pivotal in taking genetic testing mainstream, the FDA called for the company to take its testing kits off the market until it can demonstrate empirical evidence to support their advertised claims. By December, 23andMe had halted all sales of their genetic tests and is currently facing a class action law suit. To make matters worse for the direct-to-consumer (DTC) genetic testing market, in December Kira Peikoff, a graduate student at Columbia University, wrote a report for the New York Times on the varying results she received from three different DNA testing companies.

“Consumers Start Using Coverage under Health Law”

by Robert Pear and Abby Goodnough, New York Times, January 1, 2014

Consumers around the country began using coverage provided by the new health care law on Wednesday, the same day that Medicaid expanded to hundreds of thousands of people in about half the states. Many provisions of the 2010 health care law offering new benefits and protections to consumers, including those with preexisting conditions, also took effect. (http://tinyurl.com/l3wsp8n) The Affordable Care Act continues to be a major news item as web site glitches and regulations regarding the law’s implementation get hammered out. Recently, the federal government launched a campaign enticing younger people to enroll in the government provided healthcare, a key enrollment demographic to offset increased costs associated with other age groups.

“At Issue in 2 Wrenching Cases: What to Do after Brain Death?”

by Benedict Carey and Denise Grady, New York Times, January 9, 2014

In one way, the cases are polar opposites: the parents of Jahi McMath in Oakland, Calif., have fought to keep their daughter connected to a ventilator, while the parents and husband of Marlise Muñoz in Fort Worth, Tex., want desperately to turn the machine off. In another way, the cases are identical: both families have been shocked to learn that a loved one was declared brain-dead — and that hospital officials defied the family’s wishes for treatment. (http://tinyurl. com/q9ls5sv)

“Brain-Dead, a Canadian Woman Remains a Silent Partner Awaiting Birth”

by Ian Austen, New York Times, February 6, 2014

Nearly six weeks after a pregnant Canadian woman was declared brain-dead, she remains on life support in Victoria, British Columbia, because of her family’s hope that her fetus will mature enough to be delivered. (http://tinyurl.com/q359e3x)

Two cases brought on an ethical debate about brain death and patient rights. In the case of Jahi McMath, the parents wanted to keep her on life support even though she was declared brain dead. The hospital’s policy said that they do not treat futile cases. In the case of Marlise Munoz, the husband and parents wanted to take her off of life support as per her wishes, but she was kept on life support due to an interpretation of a Texas law that does not allow a hospital to take a pregnant woman off of life support. Mrs. Munoz was eventually taken off of life support, while Ms. McMath was transferred to another location and kept on life support. These cases are contrasted to another case, reported in The New York Times in February, of Robyn Benson, who was kept on life support even though she was brain dead so that she could deliver her baby as per her husband’s request as well as his knowledge of her desires.

“Recycled Wombs Could Nurture Child and Grandchild”

by Andy Coghlan, New Scientist, January 14, 2014

Uterus transplants are go. A Swedish surgeon who successfully transplanted wombs into nine women is now helping some of them get pregnant via IVF. “We are in the process of starting embryo transfer,” says Mats Brännström of the University of Gothenburg’s Sahlgrenska Hospital. If successful, it will be the first pregnancy in a transplanted womb. (http://tinyurl.com/lwm5n8t)

Dr. Brännström has successfully transplanted several wombs, some of them from a maternal donor to her daughter, so that women without a uterus can 15 news update carry their own children to term with the aid of IVF techniques. Most of the women were either born without a uterus or lost it due to cancer. Later reports in February said that one of the donors indicates an embryo has successfully implanted. If successful, this will be the first implantation in a transplanted uterus. CBHD executive director Paige Cunningham was interviewed by World Magazine on this topic. The interview is available at http://www.worldmag. com/2014/01/womb_for_rent.

“A Deadly Outbreak, a Vaccine –and Why You Can’t Get It”

by Jen Christensen, CNN, January 19, 2014

When doctors had to remove Aaron Loy’s lower legs in November after he contracted meningococcal disease, his parents hoped students at his university would receive protection against it. So far, they’re still waiting. Loy, a promising lacrosse and soccer player at the University of California Santa Barbara (UCSB), was the victim of an outbreak of meningococcal disease, a bacterial infection that causes bloodstream infections and meningitis. (http://tinyurl.com/ pldvbep)

Two outbreaks of meningitis B occurred in two different universities, Princeton and the University of California Santa Barbara. This form of meningitis can lead to limb amputations and in some cases can be fatal. These cases touched off a strong debate, with vocal criticism of the FDA approval process since a vaccine for meningitis B is available in Europe, Canada, and Australia, but is not permitted in the United States.

“Palliative Care Unavailable for Majority of Patients in Developing Countries”

by Liz Ford, The Guardian, January 28, 2014

Nine out of 10 people in need of palliative care to relieve the pain and symptoms of a life-threatening illness – the majority of whom live in poor countries – are not receiving it, according to a report published on Tuesday. The Global Atlas of Palliative Care at the End of Life, published by the World Health Organisation and the Worldwide Palliative Care Alliance (WPCA), found that only 20 countries have palliative care firmly integrated into their healthcare systems. (http://tinyurl.com/lxmzk8j)

On the global front, the World Health Organization and the Worldwide Palliative Care Alliance brought to light the desperate need to increase the availability of palliative care treatment in developing countries. Palliative care is comfort care for chronic pain and disease or comfort at the end of life, and is a critically important part of compassionate clinical care.

“Ethics Questions Arise as Genetic Testing of Embryos Increases”

by Gina Kolata, New York Times, February 3, 2014

Genetic testing of embryos has been around for more than a decade, but its use has soared in recent years as methods have improved and more disease-causing genes have been discovered. The in vitro fertilization and testing are expensive — typically about $20,000 — but they make it possible for couples to ensure that their children will not inherit a faulty gene and to avoid the difficult choice of whether to abort a pregnancy if testing of a fetus detects a genetic problem. (http://tinyurl.com/ kccnn5d)

Advances in preimplantation genetic diagnosis (PGD) allow doctors to select embryos that will not have specific genes for a disease. However, this practice raises eugenic concerns about assessing some lives as less worthy of life than others. Additionally, with genetics, some genes indicate a person will get the disease, but other genes only indicate a chance that the person will get the disease, leading to additional questions about the appropriateness of discarding an embryo based on genetic probabilities.

“Belgium Set to Extend Right-to-Die Law to Children”

by the Associated Press, Washington Post, February 11, 2014

Belgium, one of the very few countries where euthanasia is legal, is expected to take the unprecedented step this week of abolishing age restrictions on who can ask to be put to death — extending the right to children for the first time. (http:// tinyurl.com/pppokky)

Both the Belgian Senate and House passed a bill that permits minors who are in the terminal stages of life to choose physician-assisted suicide. Supporters of the bill maintain that the bill is specific enough to protect minors from being coerced into being euthanized by parents or physicians. Those against the bill, however, do not believe that the bill will protect vulnerable minors, and question if vulnerable minors are even in a position to give appropriate informed consent.

“Acid-Bath Stem-Cell Study under Investigation”

by David Cyranoski, Nature, February 17, 2014

A leading Japanese research centre has opened an investigation into a groundbreaking stem-cell study after concerns were raised about the work’s credibility. (http://tinyurl.com/ krdmqma)

Haruko Obokata, scientist for the RIKEN Center for Developmental Biology, is the lead author of two Nature papers that purported to demonstrate a method for re-programming mature mouse cells into embryonic-like stem cells using an acid-induced “stressful” environment. This is different from the Nobel Prizewinning technique for creating induced pluriopotent stem cells (iPSC) using four key genes. Obokata’s work, however, is being investigated due to discrepancies in the figures and reproducibility issues.