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Parents Lobby States to Expand Newborn Screening Test for Rare Brain Disorder

Bioethics News - Thu, 10/05/2017 - 13:51

(NPR) – ALD is a genetic brain disorder depicted in the 1992 movie Lorenzo’s Oil, which portrayed a couple whose son became debilitated by the disease. The most serious form of the illness typically strikes boys between the ages of 4 and 10. Most are diagnosed too late for treatment to be successful, and they often die before their 10th birthday. The more De Nies learned about ALD, the more she realized how fortunate the family was to have discovered Gregory’s condition so early. Her son’s blood was tested when he was about 10 months old.

Dozens Dead as Plague Outbreak Menaces Madagascar

Bioethics News - Wed, 10/04/2017 - 14:58

(CNN) – An unusually widespread outbreak of the plague is menacing Madagascar. At least 24 people have died and more than 130 have been infected with plague across the country, according to the World Health Organization. Plague is endemic to the country, but “contrary to past outbreaks, this one is affecting larger urban areas and ports, which increases the risk of person-to-person transmission,” WHO spokesman Tarik Jasarevic said.

Clinical Research: Inequality in Medicine

Bioethics News - Wed, 10/04/2017 - 14:55

(Nature) – All drugs pose some risk to everyone who takes them. But women face more danger than men and have a lower likelihood that a therapy will work. Between 2004 and 2013, for instance, women in the United States suffered more than 2 million drug-related adverse events, compared with just 1.3 million for men, according to the US Food and Drug Administration (FDA). A special report from the US General Accounting Office found that, of the ten drugs removed from the US market between 1997 and 2000, eight were withdrawn because of side effects that occurred only, or mainly, in women.

The United States Is Failing Its Mothers

Bioethics News - Wed, 10/04/2017 - 14:53

(Nature) – Yet between 1990 and 2015, the maternal mortality rate in the United States climbed by 56%, rising from 16.9 deaths per 100,000 births to 26.4, according to a recent study that was published in The Lancet (see ‘Maternal mortality snapshot’). What caused this rise? Many people have theories but no one knows for sure. Over the past two decades, there have been no consistent documentation and analysis. Without quality data, there is no way to understand the causes of this trend.

DNA Testing Firms Are Cashing in Our Genes. Should We Get a Cut?

Bioethics News - Wed, 10/04/2017 - 14:41

(New Scientist) – YOUR DNA determines many aspects of who you are, and an increasing number of companies are claiming they can decode it for you. But they may be getting more out of it than you do. Some tests that reveal genetic trivia sell for as little as $29, although typical prices are between $100 and $200 if you want more detail, with similar costs outside the US. But the companies selling these kits stand to gain a good deal more. Their vast, growing databases of genetic information are hugely valuable to researchers and pharmaceutical companies. Flogging this data, or mining it for drug discovery, could be where the big profits lie. So should these firms be paying you, rather than charging for what might ultimately be little more than a conversation starter?

Hollywood Special Effects Are Helping Surgeons Practice Brain Surgery

Bioethics News - Wed, 10/04/2017 - 14:36

(Quartz) – Brain-surgery training can be very different from the real experience in an operating room. Cadavers are expensive and so neurosurgeons-in-training typically watch videos of the surgeries, then practice on fruits and vegetables. Doctors at Boston Children’s Hospital wanted a more true-to-life experience and turned to Hollywood.

Replacing Faulty Heart Devices Costs Medicare $1.5 Billion in 10 Years

Bioethics News - Wed, 10/04/2017 - 14:24

(New York Times) – Medicare paid at least $1.5 billion over a decade to replace seven types of defective heart devices, a government watchdog says. The devices apparently failed for thousands of patients. A report released on Monday by the inspector general’s office for Health and Human Services said officials needed to do a better job tracking these costly product failures to protect patients from harm. More detailed reporting could lead to earlier recognition of serious problems with medical devices and faster recalls of all types of “poorly performing” ones, the inspector general’s office said.

We’re Nearly Ready to Use CRISPR to Target Far More Diseases

Bioethics News - Wed, 10/04/2017 - 14:07

(New Scientist) – The big challenge is delivering the CRISPR machinery to tissues inside the body. Editing genes with CRISPR requires at least two components: a protein that cuts DNA and a piece of RNA that guides it to the precise DNA site to make the cut. Proteins and RNAs are enormous molecules compared with conventional drugs. It’s hard to get them inside cells, and they don’t usually survive in the bloodstream, either.

Employment Opportunity – Managing Editor for Source on Healthcare Price and Competition

Bioethics News - Tue, 10/03/2017 - 17:31

The Consortium at UC Hastings seeks a Managing Editor to manage and conduct legal research and analysis for the Source on Healthcare Price and Competition. The Source is an independent, nonprofit initiative of the UCSF/UC Hastings Consortium on Law, Science & Health Policy that serves as a multi-disciplinary resource for information and analysis about healthcare price and competition. The Managing Editor will work under the supervision of the Consortium Co-Director at UC Hastings to design and conduct work under the project.


Typical duties and responsibilities consist of, but are not limited to, the following:

  • Collaborate with Executive Editor to develop and execute a project work plan within grant scope;
  • Conduct independent legal research and analysis;
  • Manage day-to-day operations and function of The Source for Healthcare Price and Competition, including content, appearance, and function of the website;
  • Track news, reports, and multidisciplinary scholarship on issues related to healthcare price and competition;
  • Work with web developers to ensure that the website achieves the aims of the grant;
  • Produce scholarly written legal work product, including issue briefs, blog posts, and newsletters for publication on the Source on Healthcare Price and Competition;
  • Supervise research assistants or graduate research fellows as needed to achieve project aims;
  • Present scholarly legal work product at Consortium events, local and national conferences, policy workgroups and/or to other relevant constituencies as needed for effective dissemination;
  • Report regularly to the Consortium Co-Director and Executive Editor to ensure project progress according to plan and on grant schedule;
  • Prepare reports as may be required by grant funder, subject to review by the Consortium Co-Director and Executive Director;
  • Assist with coordination and execution of Source Advisory Board Meetings and other events;
  • Write or assist in writing grant proposals related to project work.




  • JD required;
  • A minimum of three years of relevant legal research, practice, and/or teaching experience preferred;
  • Additional advanced degree or experience related to health care, bioethics, public health, public policy or related fields preferred.



  • Excellent verbal and written communication skills;
  • Excellent legal research and analysis;
  • Experience with grant-funded research projects preferred;
  • Supervisory experience preferred;
  • Experience with website administration and WordPress preferred;
  • Sharp analytical abilities and problem-solving skills;
  • Excellent organizational skills and attention to detail;
  • Ability to work independently and as part of a team.


This is a one-year appointment, which can extend up to three years depending upon performance.

To apply, please send a resume, writing sample, and list of references to Professor Jaime King (kingja@uchastings.edu). Applications will be reviewed on a rolling basis until filled.

Faculty Position Opening – Assistant Professor of Law and Director of Medical-Legal Partnership Clinic at The University of Memphis

Bioethics News - Tue, 10/03/2017 - 17:27

The University of Memphis Cecil C. Humphreys School of Law invites applications for a tenure-track Assistant Professor of Law to direct and teach its Medical-Legal Partnership (MLP) Clinic starting in the 2018-19 academic year.  In accordance with the Law School’s commitment to a unitary-track faculty, this position will entail full tenure rights and equal voting privileges on all faculty issues.

Launched in Fall 2015, the MLP Clinic is the academic centerpiece of the Memphis Children’s Health Law Directive (Memphis CHiLD), an innovative alliance of the School of Law, Memphis Area Legal Services, and Le Bonheur Children’s Hospital. The Clinic is designed to address legal and social issues impacting the health of low-income children and families throughout Memphis.

Among his or her principal responsibilities, the successful candidate will supervise MLP Clinic students in providing civil legal services to Le Bonheur patients and their families; teach an interdisciplinary curriculum in an accompanying Clinic seminar; engage in outreach to healthcare professionals; partner with the Law School’s Institute for Health Law & Policy and other community stakeholders; and lead efforts to continue the development of Memphis CHiLD and to evaluate its impact.

Candidates must possess a J.D. or equivalent law degree, a minimum of three (3) years of legal practice experience, active membership in at least one state bar, and the ability to obtain Tennessee bar admission upon appointment. See Supreme Court Rule 7, Section 10.02 (allowing special admission to practice for attorneys employed in law school clinical programs).  Among other qualifications, candidates should also have a strong desire to supervise and work with students; substantial experience or interest in serving lower-income individuals and communities; demonstrated experience or interest in working with healthcare professionals and students; a commitment to building community relationships and programs; and a demonstrated potential for excellence in teaching and scholarly productivity.

Applicants should apply through the University of Memphis Work Forum (workforum.memphis.edu/) and submit a letter of interest, resume, and list of three references to Professor Daniel Kiel, Chair, Faculty Recruitment Committee, at dkiel@memphis.edu.  Please include “MLP Clinic Director Application” in the subject line of the email.

While the School of Law does not treat race, color, religion, national origin, gender, age, disability, or sexual orientation as dispositive in hiring decisions, the School has a strong institutional commitment to hiring persons who will add to its diversity.  The University of Memphis is an EEO/AA employer.


Personal Genetic Testing Is Here. Do We Need It?

Bioethics News - Tue, 10/03/2017 - 15:48

(New York Times) – Experts say many people are using a growing stream of genetic data to help them make better health decisions. But they also warn that some consumers may be led astray by genetic findings that are overblown or irrelevant. The Centers for Disease Control and Prevention, for example, takes a cautious approach to personal genomics tests, telling consumers on its website to “think before they spit” and that “evidence on the ability of genetic information to change health behavior has been lacking.”

Ethics of Internet Research Trigger Scrutiny

Bioethics News - Tue, 10/03/2017 - 15:46

(Nature) – Common themes among these efforts include rethinking what counts as ‘public’ data, the ethical use of social media and the need to consider a study’s potential harm to wider society, as well as to individuals. Many countries have long-standing ethical checks for research that intervenes in human lives. But those principles, set up for medical and psychological studies, apply to research on human subjects, the definition of which often excludes Internet research, says Metcalf.

What American Taught the Nazis

Bioethics News - Tue, 10/03/2017 - 15:33

(The Atlantic) – Every day brings fresh reminders that liberal and illiberal democracy can entwine uncomfortably, a timely context for James Q. Whitman’s Hitler’s American Model, which examines how the Third Reich found sustenance for its race-based initiatives in American law. Upon docking, the Germans attended a reception organized by the New York City Bar Association. Everyone in the room would have known about the recent events in Nuremberg, yet the quest by leading Nazi jurists to learn from America’s legal and economic systems was warmly welcomed.

Deciding Death

Bioethics News - Tue, 10/03/2017 - 15:16

(US News & World Report) – This month, the New York Court of Appeals – New York’s high court – unanimously rejected an effort by activists to impose the practice there by judicial fiat. That decision from New York echoes a similar 2016 ruling by New Mexico’s Supreme Court that no “fundamental right to die” exists. The results in these two cases have certainly dealt a serious strategic setback to death-by-doctor efforts nationally, but the reasons the courts have given for refusing to accept doctor-aided death after having closely examined the arguments have been even more telling.

Chinese Scientists Fix Genetic Disorder in Cloned Human Embryos

Bioethics News - Tue, 10/03/2017 - 15:12

(Nature) – A team in China has taken a new approach to fixing disease genes in human embryos. The researchers created cloned embryos with a genetic mutation for a potentially fatal blood disorder, and then precisely corrected the DNA to show how the condition might be prevented at the earliest stages of development. The report, published on 23 September in Protein & Cell is the latest in a series of experiments to edit genes in human embryos. And it employs an impressive series of innovations, scientists say. Rather than replacing entire sections of genes, the team, led by Junjiu Huang at Sun Yat-sen University in Guangzhou, China, tweaked individual DNA letters, or bases, using a precision gene-editing technology developed in the United States.

Body Clock Scientists Win Nobel Prize

Bioethics News - Tue, 10/03/2017 - 14:56

(BBC) – Three scientists who unravelled how our bodies tell time have won the 2017 Nobel Prize for physiology or medicine. The body clock – or circadian rhythm – is the reason we want to sleep at night, but it also drives huge changes in behaviour and body function.The US scientists Jeffrey Hall, Michael Rosbash and Michael Young will share the prize. The Nobel prize committee said their findings had “vast implications for our health and wellbeing”.

Genome Editing of Human Embryos Broadens Ethics Discussions

Bioethics News - Tue, 10/03/2017 - 14:52

(The Conversation) – Much of the global discussion over the ethics of modifying human embryos has focused on whether the technique might be unsafe or used for non-medical purposes. Niakan’s recent project brings other aspects of this debate to light. How do scientists acquire the embryos they use in their research, and how are their projects approved?

Hurricane Harvey-Related Diseases Have Increased, Health Officials Warn

Bioethics News - Tue, 10/03/2017 - 14:35

(Newsweek) – Hurricane Harvey may be over, but the devastating damage left behind by the storm still lingers. As residents continue to cleanup, public health officials are now warning victims of possible home hazards. Officials in Harris County Texas are traveling to each residency, advising tenants to be cautious while they clean.

Artificial Organs Used in Operations without Approval for Humans

Bioethics News - Tue, 10/03/2017 - 14:22

(New Scientist) – Experimental implants manufactured at University College London were sent abroad and used on patients despite not having approval for human use, an inquiry has found. The implants included an artificial windpipe, a synthetic tear duct and an arterial graft. The inquiry, led by Stephen Wigmore of the University of Edinburgh at the request of UCL, was triggered by the university’s relationship with Paolo Macchiarini, a surgeon at the centre of a scandal in which six of eight patients who received synthetic windpipes died.