Top Bioethics Stories - Fall 2013

No items found.
No items found.
Back to Dignitas Issue

“DSM-5 Finally Debuts, Markedly Changed from Earlier Editions”

by Christine S. Moyer American Medical News, June 3, 2013

Nearly two decades after work began on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the manual is ready for use by physicians. The long-awaited print version was released May 17 during the American Psychiatric Association’s annual meeting in San Francisco. DSM-5 will be available online later this year. (http://tinyurl. com/mtbpkpk)

Last spring there was much debate over how the DSM-5 would portray mental illness. The Diagnostic and Statistical Manual of Mental Disorders has long been the standard for diagnosing mental illness; its recent edition, however, has garnered criticism for making the boundaries of mental illness too allencompassing. This could lead to healthy people being treated, or even medicated, for problems that are not clinical mental illnesses. Part of the revision process of the DSM-5 involved soliciting online commentary from medical health professionals.

“Judge Moves Sarah Murnaghan onto Adult Lung List”

BBC, June 6, 2013

A US federal judge has allowed a severely-ill 10-year-old girl a prime spot on the list to receive an adult lung transplant, despite her young age. (

“Sarah Murnaghan Had Two Lung Transplants, One Failed”

by Sydney Lupkin, ABC News, June 28, 2013

The 10-year-old girl whose parents successfully fought a rule preventing her from qualifying for adult lungs didn’t have just one lung transplant from an adult donor this month. She had two. (

Sarah Murnaghan was dying of lung failure due to cystic fibrosis. She was on the pediatric donor list. Her mother, however, petitioned to receive an exception to the Under-12 Rule, which generally requires that adult lungs be offered to adult patients in a region before being offered to children who would otherwise be higher on the transplant list. A federal judge allowed for her to receive adult lungs, and later the Organ Procurement and Transplantation Network (OPTN) created a mechanism for exceptions to the Under-12 Rule to be made on a case-by-case basis. The initial transplant failed, necessitating a second.

“US Supreme Court Says Human DNA Cannot Be Patented”

BBC, June 13, 2013

Human genes may not be patented, but artificially copied DNA can be claimed as intellectual property, the US Supreme Court has ruled unanimously. The court quashed patents held by a Utah-based firm on two genes linked to breast and ovarian cancer. The opinion said DNA came from nature and was not eligible for patenting. ( kqvx6jq)

Myriad genetics has been involved in a three-year court battle over patent rights for genes isolated using its techniques. Specifically, the case centered upon two genes, BRCA1 and BRCA2, known to be markers for breast and ovarian cancer. The U. S. Supreme Court decided that Myriad cannot patent these genes because they occur in nature. If a company makes a synthetic gene in the lab, however, then it is eligible to patent that gene.

“Administration Issues Final Rules on Contraception Coverage and Religious Organizations”

Department of Health and Human Services, June 28, 2013

Today, the Obama administration issued final rules that balance the goal of providing women with coverage for recommended preventive care – including contraceptive services prescribed by a health care provider – with no cost-sharing, with the goal of respecting the concerns of non-profit religious organizations that object to contraceptive coverage. The final rules reflect public feedback received in response to the Notice of Proposed Rulemaking issued in February 2013. (

The Obama administration announced a compromise allowing for certain religious organizations to be exempt from providing coverage for contraception. Contraception coverage for the employees of such organizations will be provided separately to women on their health plans at no purported cost to the organizations.

“Japan Approves World’s First iPS Stemcell [sic] Clinical Trial”

by Kyoko Hasegawa, AFP, June 27, 2013

Japan has given the green light to the world’s first clinical trial using stem cells harvested from a patient’s own body, officials said Thursday, testing a treatment that may offer hope to millions of people robbed of their sight. ( )

Researchers in Japan received approval to proceed with a clinical trial using induced pluripotent stem cells (iPSCs) made from the patient’s own skin cells. The trial will involve harvesting skin cells, converting them into iPSCs, and developing the latter into retinal cells. The trial participants all have age-related macular degeneration; they will receive the newly formed retinal cells, and researchers will determine whether this procedure improves the patients’ vision. This will be the world’s first clinical trial using iPSCs.

“Miniature Human Liver Grown in Mice”

by Monya Baker, Nature, July 3, 2013

Transplanting tiny ‘liver buds’ constructed from human stem 15 news update cells restores liver function in mice, researchers have found. Although preliminary, the results offer a potential path towards developing treatments for the thousands of patients awaiting liver transplants every year. (

Researchers were able to use a combination of induced pluripotent stem cells (iPSCs) coaxed into becoming liver cells, umbilical cord blood cells, and mesenchymal stem cells to make small liver “buds.” The buds were transferred into mice that had liver failure, where they took on certain liver functions that kept the mice alive. Furthermore, the liver buds continued to grow within the mice. This experiment received quite a bit of press because of its potential as an eventual source of human organs.

“IVF Baby Born Using Revolutionary Genetic-Screening Technique”

by Ian Sample, The Guardian, July 7, 2013

The first IVF baby to be screened using a procedure that can read every letter of the human genome has been born in the US. Connor Levy was born on 18 May after a Philadelphia couple had cells from their IVF embryos sent to specialists in Oxford, who checked them for genetic abnormalities. The process helped doctors at the couple’s fertility clinic in the US select embryos with the right number of chromosomes. ( n6hyyua)

Using a new genome sequencing technique, “next-generation sequencing,” scientists were able to sequence an embryo’s entire genome quickly and relatively cheaply. While the doctors in this case were looking only at the number of chromosomes in the embryonic cells, they could have looked at the embryo’s entire genetic sequence, if needed. As Dagan Wells, the fertility specialist who directed the screening, points out, this technique “can’t make embryos better . . . but it can guide us to the best ones.”

“Gene Therapy Trial ‘Cures Children’”

by James Gallagher, BBC, July 11, 2013

A disease which robs children of the ability to walk and talk has been cured by pioneering gene therapy to correct errors in their DNA, say doctors. The study, in the journal Science, showed the three patients were now going to school. A second study published at the same time has shown a similar therapy reversing a severe genetic disease affecting the immune system. (

Gene therapy, much like stem cell research today, was hailed in the 1980s and 1990s as the next great medical breakthrough. But it has not cured the numerous diseases people had hoped it would. The tragic story of Jesse Gelsinger, who died from gene therapy, also set research back. Now two trials, one involving patients with metachromatic leukodystrophy and the other Wiskott-Aldrich syndrome, have proven successful. In both trials the children’s bone marrow stem cells were removed, infected with viruses carrying DNA without the offending mutation, and then returned to the patient’s body.

“Neuroscience: Solving the Brain”

by Allison Abbott, Nature, July 17, 2013

. . . on 2 April, Obama announced a US $100-million initial investment to launch the BRAIN Initiative, a research effort expected to eventually cost perhaps ten times that amount. The European Commission has equal ambitions. On 28 January, it announced that it would launch the flagship Human Brain Project with a 2013 budget of €54 million (US $69 million), and contribute to its projected billion-euro funding over the next ten years. ( l52sbqb)

Both the U.S. and Europe have their minds set on mapping the human brain in an effort to better understand how its intricate neural connections work. The hope is that, by mapping the complex architecture of the brain, we can better understand the internal mechanisms and, perhaps, gain insight into mental illness, Alzheimer’s, and other neurological diseases.

“Scott Simon: 48 Hours with Dying Mom Sad and ‘Exhilarating’”

by Susan Donaldson James, ABC News, July 31, 2013

Radio host Scott Simon never intended to tweet his mother’s final hours to 1.2 million followers, but her dying moments were among the most emotional in his public life. (http://

The ubiquity of social media brings up questions about privacy. Our privacy laws do not seem to extend to social media (several difficult cases regarding privacy issues have arisen recently), and our social norms about privacy do not seem to apply stably in that arena either. One of the most high-profile of recent stories, which garnered the attention of many bioethicists, was that of Scott Simon tweeting about the death of his mother.

“Famous HeLa Cells Get Genetic Close-Up, and New Data-Sharing Rules”

by John Bohannon, Science Insider, August 7, 2013

Five months after it was hastily removed from the Internet in the face of harsh criticism, the genome of the widely used HeLa cell line is back online today. Not only that, but it is also now sequenced at the highest level of resolution yet for a cancer research cell line. But scientists who want to use those data must now ask for permission from a committee that includes descendants of the woman whose cells were taken—without her consent—62 years ago. (http://tinyurl. com/kqtt4yb)

The Immortal Life of Henrietta Lacks, by Rebecca Skloot, brought to light an egregious case of researchers ignoring informed consent rules and disregarding genetic privacy. HeLa cells have been used in research for decades, but were initially harvested and grown without obtaining consent from Ms. Lacks or her family. In response to numerous complaints about the HeLa cells’ genetic sequence being posted online, the NIH made new rules requiring scientists to obtain permission to use HeLa cells.