by Ewen Callaway, Nature, June 15, 2017
Compare the genomes of enough people with and without a disease, and genetic variants linked to the malady should pop out. So runs the philosophy behind genome-wide association studies (GWAS), which researchers have used for more than a decade to find genetic ties to diseases such as schizophrenia and rheumatoid arthritis. But a provocative analysis now calls the future of that strategy into question . . . . (https://tinyurl.com/y725fuum)
Several news stories this past summer drew attention to potential limitations of genetic sequencing, such as the problems with genome-wide disease studies addressed by this Nature article. These studies compare thousands of genomes with a particular disease to genomes without, with the assumption that variances are likely associated with the disease. However, scientists found that many of these variants do not have biological relevance or that several thousand variants may play a role in a particular disease, but none play a large enough role for targeted therapies.
AFP, Al Arabiya.net, June 27, 2017
When Pakistani authorities burst into a makeshift hospital in Lahore this year, doctors were caught mid-way through two illegal kidney transplants, the local donors and Omani clients still unconscious on the tables. The doctors were allowed to finish the operation then arrested . . . . (https://tinyurl.com/y924q66q)
by Ashraf Abdel-Hamid, Al Arabiya.net, August 23, 2017
Egyptian authorities announced on Tuesday evening [August 22nd] the capture of a gang of medical staff for trafficking human organs in the area of Abu Nomros in Giza, southern Egypt. The authorities arrested 16 people involved in the case, reported Al Arabiya. (https://tinyurl.com/ycggqy8x)
Illegal organ trading has been an ongoing problem in Pakistan, where enforcing rules against organ trafficking is difficult. This past summer, however, successful reports of stifling traffic rings in Pakistan and Egypt demonstrate that efforts are underway to curb the practice. Additionally, China has shown some progress in banning the procurement of organs from executed prisoners.
by Susan Scutti, CNN, June 30, 2017
The European Court of Human Rights ruled Tuesday a hospital can discontinue life support to a baby suffering from a rare genetic disease. Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. (https://tinyurl.com/yay2snyu)
BBC, July 28, 2017
Charlie Gard, the baby at the centre of a legal row over his treatment, has died, a family spokesman has confirmed. The 11-month-old was moved to a hospice following a High Court ruling. (https://tinyurl.com/y825xx3t)
The Charlie Gard case garnered international attention largely because of a social media campaign to save his life, and resulted in conflicting assessments among those in prolife advocacy and Christian bioethics. After going through several appeals through the British court system, the European Court of Human Rights determined that the hospital could discontinue life support for 11-month-old Charlie Gard. His parents, Chris Gard and Connie Yates, wanted to transport him to the U.S. for experimental treatment that had never been tried on his specific disorder. While Charlie had a slim chance at survival even with the experimental treatment, some ethicists question whether the hospital and the court stepped over the line by overriding the parents’ authority to make decisions for their child. Some raised questions regarding the nature of the U.S. researcher’s consult and recommendation for this experimental treatment. Still others argued that the parents were not making a decision that was in Charlie’s best interests.
by Megan Molteni, Wired, July 19, 2017
Usually people pay money for medicine after there’s proof it works. In the last few years, some of these stem cell clinicians have begun posting large-scale studies on a government-run website called ClinicalTrials.gov, even though they’re often not up to medical research standards or even in compliance with federal regulations. This allows them to masquerade their pay-to-participate studies as legit science. (https://tinyurl.com/y8obpdm8)
Many companies are trying to profit from stem-cell “therapies” that have not been tested for safety or efficacy (NPR, https://tinyurl.com/ydblxz6a). Because many of these therapies use the patients’ own stem cells, some companies have sought to work around certain FDA regulations and were even using ClinicalTrials.gov as a way to advertise for their procedures. In response to reports of injury and mistreatment, the FDA has started sending warnings and confiscating dangerous materials from questionable stem cell clinics.
by Maria Cheng, Associated Press, August 2, 2017
Euthanasia has become “common practice” in the Netherlands, accounting for 4.5 percent of deaths, according to researchers who say requests are increasing from people who aren’t terminally ill. (https://tinyurl.com/y8yaqpzn)
“111 People Died Under California’s New Right-to-Die Law” by Ben Tinker, CNN, June 29, 2017
One hundred eleven people died last year under California’s new right-to-die law, according to a report released Tuesday [June 27th] by the state’s Department of Public Health. (https://tinyurl.com/y8gefuby)
Prior to state officials releasing data, Compassion & Choices reported that since the California right-to-die law was put into effect, they have had at least 504 terminally ill people contact them requesting a prescription for drugs to end their life (https://tinyurl.com/ycodab98). This count inexplicably differs from the state report, which says that 258 people initiated the process and 191 people were prescribed medication. Meanwhile, euthanasia rates in The Netherlands—where such practices are legal––continue to grow at an alarming rate, now accounting for approximately 4.5% of all deaths in the country.
by Heidi Ledford, Nature, August 2, 2017
An international team of researchers has used CRISPR–Cas9 gene editing—a technique that allows scientists to make precise changes to genomes with relative ease—to correct a disease-causing mutation in dozens of viable human embryos. The study represents a significant improvement in efficiency and accuracy over previous efforts. (https://tinyurl.com/y9fmpgcs)
CRISPR-Cas9 is a robust gene editing tool that has reenergized the field of genetic engineering. This summer researchers in the U.S. used CRISPR to edit the gene for hypertrophic cardiomyopathy in a human embryo. Shoukhrat Mitalipov’s group found no evidence for off-target cuts, and of 58 embryos (all were destroyed), only one was a mosaic where different cells within the embryo contain different genetic sequences. Experts caution that just because Mitalipov’s group did not find off-target cuts, does not mean that they are not there.
by Julian Quinones and Arijeta Lajka, CBS News, August 14, 2017
With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland. Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women—close to 100 percent—who received a positive test for Down syndrome terminated their pregnancy. (https://tinyurl.com/y8snacge)
While it is well-known in bioethics circles that the vast majority of babies found to have Down syndrome (DS) and other genetic disorders through pre-natal screening are often aborted, Iceland made headlines by claiming to be almost Down syndrome free. Most women in Iceland choose pre-natal screening, and most abort if the baby is found to have DS. However, the tests do not always catch chromosomal abnormalities, so every year about two babies are born with DS in Iceland. Many condemn this as modern-day eugenics, while other countries, such as China, have greatly increased their use of pre-implantation genetic diagnosis for the purpose of eliminating embryos with unwanted genetics.
by Donald G. McNeil, Jr., The New York Times, August 14, 2017
More than 500,000 Yemenis have been infected with cholera this year, and nearly 2,000 have died, the World Health Organization said Monday [August 14th]. Cholera is endemic in Yemen . . . . Civil war and bombing by neighboring Saudi Arabia have crippled much of the country’s water-distribution system, destroyed hospitals and forced vast numbers of people to flee their homes. (https://tinyurl.com/yamjpza7)
Deemed the worst cholera outbreak in the world by the WHO, the most recent numbers indicate that there are actually 750,000 suspected cases of cholera, more than half of whom are children. The Red Cross predicts that there will be one million cases of cholera in Yemen by the end of the year.
by Casey Ross and Kate Sheridan, STAT News, August 29, 2017
Tropical Storm Harvey has flooded the roads in and around MD Anderson’s primary Houston hospital, leaving one of the world’s foremost cancer centers unable to see patients for appointments or previously scheduled treatments until Thursday [August 31st] at the earliest. (https://tinyurl.com/ybao88ms)
Hurricane Harvey, a massive hurricane whose impact spanned the length of the Texas coast, caused devastating floods and damage to downtown Houston and its surrounding areas. Houston has one of the nation’s largest medical districts, including the MD Anderson Cancer Center. Several hospitals were stranded in rising floodwaters without access to food and supplies for their patients. Many patients were unable to get to the hospital for planned treatments or emergencies. The flooding caused other public health concerns including risk of bacterial infection.
by Rob Stein, NPR, August 30, 2017
The Food and Drug Administration on Wednesday announced what the agency calls a “historic action”—the first approval of a cell-based gene therapy in the United States. The FDA approved Kymriah, which scientists refer to as a “living drug” because it involves using genetically modified immune cells from patients to attack their cancer. (https://tinyurl.com/y9yhetfq)
The FDA approved a leukemia therapy that involves removing and genetically modifying a patient’s immune system T-cells so that when the cells are placed back into the patient, they will attack and kill the cancer cells, generally known as CAR-T cell therapy. The trials using CAR-T for acute lymphoblastic leukemia saw 83% of children and young adult patients go into remission. Ethicists are concerned about the risks in CAR-T therapy, which involves changes to the immune system, and they are concerned about the cost for the one-time treatment, which will be $425,000 for patients who respond to the treatm
