Tag: genomics

Bioethics Blogs

H3Africa: Fostering Collaboration

Caption: Pioneers in building Africa’s genomic research capacity; front, Charlotte Osafo (l) and Yemi Raji; back, David Burke (l) and Tom Glover.
Credit: University of Michigan, Ann Arbor

About a year ago, Tom Glover began sifting through a stack of applications from prospective students hoping to be admitted into the Master’s Degree Program in Human Genetics at the University of Michigan, Ann Arbor. Glover, the program’s director, got about halfway through the stack when he noticed applications from two physicians in West Africa: Charlotte Osafo from Ghana, and Yemi Raji from Nigeria. Both were kidney specialists in their 40s, and neither had formal training in genomics or molecular biology, which are normally requirements for entry into the program.

Glover’s first instinct was to disregard the applications. But he noticed the doctors were affiliated with the Human Heredity and Health in Africa (H3Africa) Initiative, which is co-supported by the Wellcome Trust and the National Institutes of Health Common Fund, and aims in part to build the expertise to carry out genomics research across the continent of Africa. (I am proud to have had a personal hand in the initial steps that led to the founding of H3Africa.) Glover held onto the two applications and, after much internal discussion, Osafo and Raji were admitted to the Master’s Program. But there were important stipulations: they had to arrive early to undergo “boot camp” in genomics and molecular biology and also extend their coursework over an extra term.

Both agreed and were soon put through the paces of performing basic lab techniques, hearing about the latest in DNA sequencing, learning the basics of designing genomic studies, and immersing themselves in their courses.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The 14 day rule – A brief update

In early December, this blog commented upon the 7 December 2016 conference at University College London, which debated rethinking the ethics whether or not to increase the UK’s restriction on experimentation on human embryos from 14 to 28 days. One result of that conference is that the Progress Educational Trust (the sponsor of the original conference) has since submitted a request to the House of Commons Science and Technology Committee to open a new Parliamentary inquiry. That Committee’s response (in typical bureaucratic fashion) was to table the request until their current inquiry of genomics and genome editing was complete (see number 6 in their report).

In my Internet stalking of this issue, I came across a mid-January 2017 BBC Radio 4 two-part telecast coverage of the issue by Matthew Hill, which I commend to you. Each is approximately 30 minutes. Part 1 provides background information primarily regarding the general history of IVF in the UK in general and the history of the 14 day rule in particular, all done via present day interviews of the actual historical figures (or recorded interviews done at the time the events were transpiring). Note that the first 2 minutes are unrelated to the topic. Part 2 is similar, though concentrates upon the key persons in the current debate of moving from the present 14 day limit to a proposed new 28 day limit for embryo experimentation. If you don’t have time or inclination to listen to the whole series, consider the following snippets (time in minutes from start of each recording):

  • Part 1 – 12:00 – 15:00 – Baroness Mary Warnock discusses why she and the Warnock Committee settled on 14 days (arbritary, but a fixed number of days made more sense than a point in embryologic development that varied slightly from embryo to embryo).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Genomics Reveal Surprises about Florida Zika Outbreak

March 6, 2017

(Medscape) – The Zika virus outbreak in the United States in 2016 was caused by multiple infected travelers arriving in South Florida, not by a single “patient zero,” genomic research has revealed. “From an epidemiologic standpoint, it’s important to understand we had multiple introductions. It’s not something that happened once — it happened over and over,” said Kristian Andersen, PhD, of Scripps Translational Science Institute in La Jolla, California.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

How Genetic Analyses Might Get to the Masses

February 28, 2017

(Scientific American) – For doctors trying to treat people who have symptoms that have no clear cause, gene-sequencing technologies might help in pointing them to a diagnosis. But the vast amount of data generated can make it hard to get to the answer quickly. Until a couple of years ago, doctors at US Naval Medical Research Unit-6 (NAMRU-6) in Lima had to send their sequence data to the United States for analysis, a process that could take weeks—much too long to make pressing decisions about treatment. “If all you could do was get the data that you then have to ship to the US, it’s almost useless,” says Mariana Leguia, who heads the centre’s genomics and pathogen-discovery unit.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

ACMG Urges Caution When Editing Embryo Genomes

January 31, 2017

(The Scientist) – The board of directors of the American College of Medical Genetics and Genomics (ACMG) released a statement last Thursday outlining their concerns about genome editing technologies in Genetics in Medicine (January 26). “Genome editing offers great promise for the future treatment of individuals and families with genetic disorders,” the authors write, “but also raises major technological and ethical issues that must be resolved before clinical application.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Medicine and the Holocaust in Medical Education: International Holocaust Remembrance Day – January 27

By Hedy S. Wald

“Medicine was used for villainous ends during the Holocaust.  The Holocaust was an enormous trauma inflicted on human dignity and the human person; medicine was implicated in crimes against humanity.”  His Eminence Daniel Cardinal DiNardo, Archbishop of Galveston-Houston.1

January 27 is International Holocaust Remembrance Day, a day designated by the United Nations General Assembly resolution 60/7 in 2005 after a special session marking the 60th anniversary of the liberation of the Nazi concentration camps and the end of the Holocaust. In the words of Secretary General Ban-Ki Moon (2008), “The International Day in memory of the victims of the Holocaust is a day on which we must reassert our commitment to human rights… We must also go beyond remembrance, and make sure that new generations know this history.  We must apply the lessons of the Holocaust to today’s world.”2

Indeed.  A recent medical humanities article (co-authored with my colleagues Drs. Rubenfeld and Fins)1 was a resounding call for teaching lessons of the Holocaust within medical education.  We joined others in the medical education/bioethics community calling for a curriculum that would create space for a mix of reflective practice and historical awareness to grapple with the medical profession’s central role in “using science to help legitimize persecution, murder and ultimately genocide.”3

“Almost every aspect of contemporary medical ethics is influenced by the history of physician involvement in the Holocaust,” Wynia and colleagues wrote.1  The United States Holocaust Memorial Museum’s (USHMM) “Deadly Medicine: Creating the Master Race” exhibit3 documents the moral failures of individual physicians and the medical establishment during the Third Reich including participation in horrific experimentation and medicalized genocide. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Oxford Handbook of U.S. Health Law

The Oxford Handbook of U.S. Health Law is now available.

Part I An Overview of the Legal Governance of Healthcare

  • Relating Health Law to Health Policy: A Frictional Account – William M. Sage
  • The Relationship between Bioethics and U.S. Health Law: Past, Present, and Future – I. Glenn Cohen
  • What Health Reform Reveals about Health Law – Allison K. Hoffman
  • A View from a Friend and Neighbor: A Canadian Perspective on U.S. Healthcare and the Affordable Care Act – Colleen Flood and Bryan Thomas
  • Healthcare Federalism – Abigail R. Moncrieff and Joseph Lawless

Part II Caring and Receiving Care

A. Access to Healthcare

  • Accessing Hospitals and Health Professionals – Eleanor D. Kinney
  • Access to Health Insurance and Health Benefits – Timothy Stoltzfus Jost
  • Legal Battles against Discrimination in Healthcare – Dayna Bowen Matthew

B. Legal Issues in Information Exchange

  • Health Information Law – Frank Pasquale
  • The Promise of Informed Consent – Robin Fretwell Wilson 
  • Communicating Loyalty: Advocacy and Disclosure of Conflicts in Treatment and Research Relationships – Robert Gatter 
  • Medical Privacy and Security – Sharona Hoffman

C. Ethics and Law of Treatments

  • New, Experimental, and Life-Saving Therapies – B. Jessie Hill
  • Mental Health and Other Behavioral Health Services – John V. Jacobi
  • Assisted Reproductive Technologies and Abortion – Judith Daar
  • Conscientious Refusals of Care – Elizabeth Sepper
  • Disability and Health Law – Leslie Francis, Anita Silvers, and Michael Ashley Stein
  • Autonomy and Its Limits in End-of-Life Law – Rebecca Dresser

D. Recourse for Injury

  • Medical Malpractice Liability: Of Modest Expansions and Tightening Standards – Barry R.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Biopolitical News of 2016

The biggest surprise of the year was probably the birth, in Mexico, of a baby who was conceived following controversial mitochondrial manipulation (“3-parent IVF”). The location was chosen by a New York-based fertility doctor who noted that in Mexico “there are no rules.” Since 3-person IVF is technically a form of inheritable genetic modification, one big question is whether its increasing use and normalization will open the door to wider acceptance of gene editing for human reproduction.

The gene editing shockwaves of 2015 – when Crispr was first applied in human embryos, and controversy about the prospect of using it for human reproduction became explicit – developed into a somewhat more predictable flood of activity and comment in 2016. The big, and unfortunate, news here is perhaps the non-news: the absence of any significant efforts to encourage public participation in deliberations about whether powerful new genetic manipulation tools should be used in efforts to control the traits of future children and generations.

The most consequential news of the year for biopolitics as for so much else may well turn out to be the US presidential election result, but the consequences themselves remain somewhat unclear. Trump’s comments about having “the right genes” are ominous warning signs, which are perhaps getting worse, as partly described below.

Cross-border commercial surrogacy was in the news this year because of scandals, disputes, and changes in the laws of several nations where it had taken hold. Commercial pressures were particularly apparent in the slick marketing being used to promote egg freezing among young women with no fertility problems.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Trump, Science and Social Justice

It has not escaped our notice that the specific process we have witnessed in the last month immediately suggests a possible alteration of the regulatory and ideological landscape. As with genomics, however, the devil is in the details and many of them remain obscure. Some general outlines have emerged, and they are frightening to anyone who cares about social, economic or environmental justice.

It seems certain that the Electoral College will confirm Donald Trump as the winner of the Presidential Election, although a few “faithless electors” might cast protest votes. It is absolutely certain that Hillary Clinton won the popular vote; at this writing, she is leading by 2,7 million votes and seems likely to have attracted more votes than any previous Presidential candidate. Nevertheless, Trump and Vice-President-elect Mike Pence are not only claiming a mandate, they are backing their talk up with extraordinarily reactionary appointments.

In part, this may be down to Trump’s inexperience: He seems to be picking people he knows. And Generals. Reuters is running a list of top appointments, and Nature had a useful summary of possible science-related appointees last week. But what other criteria does he have?

Eugenics, apparently:

All men are created equal; well, it’s not true, ’cause some are smart, some aren’t. …  You have to have the right genes. … I’m a gene believer … I’m proud to have that German blood. There’s no question about it. Great stuff.

And white supremacy. Of course, that is denied, for instance by a founder of The American Conservative:

The United States is entering into [a] period of demographic transformation, where whites, politically and demographically dominant for all of the nation’s history, will become a smaller majority, and perhaps then a plurality.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Introducing a Special Issue of PLOS Medicine: Clinical Implications of Cancer Genomics

Senior Editor Richard Turner discusses the contents of the Cancer Genomics Special Issue’s first week. This month, PLOS Medicine’s content is devoted entirely to our special issue on the clinical implications of cancer genomics—two leading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.