domingo, 28 de mayo de 2017

BioEdge: Dear Mr Trump, isn’t it about time to announce your bioethics commission?

BioEdge: Dear Mr Trump, isn’t it about time to announce your bioethics commission?

BioEdge |Sunday, May 28, 2017 | BioEdge|

Dear Mr Trump, isn’t it about time to announce your bioethics commission?

Last week, seven Democratic members of the US House Representatives sent a letter to the White House asking President Trump to appoint a director to the Office of Science and Technology Policy (OSTP), position that normally serves as the presidential science advisor. The impetus for writing the letter was a communication from the Deputy National Science Advisor that two hoax reports, that tried to undermine climate change, were circulating through the West Wing as “science.” The Congresspersons state “Where scientific policy is concerned, the White House should make use of the latest, most broadly-supported science…Relying on factual technical and scientific data has helped make America the greatest nation in the world.” Among the signers are a PhD in math and a PhD in physics. They hold that the US faces strong questions that revolve around science, both opportunities and threats, and the need for a scientist who can understand and explain the importance of objective fact to the chief executive is essential.

This article led me to think that the US also faces a lot of issues regarding health and medicine and their impact on society. Consider the task of creating a new health plan, CRISPR/CAS-9, in vitro gametogenesis, the threat of Zika, extra uterine gestational systems, legalized marijuana, digital medicine—pharmaceutical computing for treating disease, head transplants, and DYI science are among the bioethical issues that will effect policy in the coming few years. Thus, it is time for President Trump to call for his Presidential Bioethics Commission.

The last bioethics advisory body ended in January 2017, although many of the staff are still winding down the office and archiving the many reports and papers produced. President Obama called for this group in 2009 and commissioned them to identify, examine, promote and advise on ethical issues in science and technology:

The Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) is an advisory panel of the nation’s leaders in medicine, science, ethics, religion, law, and engineering. The Bioethics Commission advises the President on bioethical issues arising from advances in biomedicine and related areas of science and technology. The Bioethics Commission seeks to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in a socially and ethically responsible manner.
With the exception of George W. Bush, every president since Gerald Ford has had a national bioethics commission. The very earliest of these was not created by an executive order, but rather by an act of Congress that saw the need for specialists to examine the ethical issues of the life sciences. Consider the 1974 National Research Act, which created The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1974-78) during Gerald Ford’s presidency. This is the group that wrote the Belmont Report, which has become the basis for ethical (and bureaucratized) research in the United States and much of the world.

Congress also created The Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1978-83) during Jimmy Carter’s administration and in the beginning of Ronald Reagan’s. Among its noteworthy accomplishments was the report Defining Death and examinations of whistleblowing, compensation for injuries in research, genetic engineering, genetic counseling, and access to care.

In 1994, President Clinton called for The Advisory Committee on Human Radiation Experiments (1994-95) to examine the US Human Radiation Experiments. Soon after their final report was issues, Clinton commissioned The National Bioethics Advisory Commission (NBAC’; 1996-2001). This group looked at human subjects research, international research, stem cell research, and cloning among other projects.

President George W. Bush commissioned The President’s Council on Bioethics (PCBE; 2001-2009). This group was famously criticized for representing a more conservative approach to the life sciences on topics such as stem cell research, human cloning, reproductive technologies, and caregiving. They published a reader, Being Human, that brought together classic literature and commentaries on how the stories inform the bioethical challenges of the time. Ben Carson, the current HUD secretary, was a member of this group.

President Barack Obama created the Presidential Commission for the Study of Bioethical Issues (2009-2017). Among their projects was looking at neuroscience, responding to pandemics, incidental findings in research, whole genome sequencing, human research subjects protection, synthetic biology, and the Guatemala Syphilis studies.

A luminary in bioethics or the life sciences has chaired each commission. Often, the choice of chair was criticized for particular political or philosophical leanings. Some presidents have been active in selecting the other members of the commissions and others have been more hands off. Their reports have been studied in classes, formed the basis of regulations and laws, and brought changes to research practices.

In 2017, our nation continues to grapple with a host of new life science technologies at an increasingly rapid rate of discovery and innovation. These breakthroughs will not taper off or go away just because the new administration chooses not to explore these tools and their profound implications for policy. Even if the US does not conduct research in these areas, the rest of the world will and we will still need to deal with them.

Wesley Smith, a conservative thinker, has also called for a bioethics commission in order for the administration to put a conservative stamp on policy.

“It would appear that he [Trump] has given little thought to bioethical matters, much less pondered the ethical principles that would illuminate administration policy-making surrounding them. That’s politically dangerous. Bioethics issues have the potential to explode suddenly into the public consciousness and grab an administration by the throat.”
However, rather than being led and staffed mostly by bioethics scholars, Smith would like to see a “populist commission” that would be more public, include issue advocates, and “sponsor public presentations and debates” in the media.

Given the friction between the new administration and the various ethics offices in the government, it is important to explain to Mr. Trump that ethics in bioethics has a different meaning than ethics in bureaucracy. The Congressional ethics office and the Office of Government Ethics exist to enforce compliance with law—conflicts of interest statutes as well as accountability and transparency regulations. They provide oversight to ensure that the rules are followed. However, bioethics is not the “ethics police” but rather is about asking questions, examining possibilities, and providing guidance in often-uncharted waters.

This common misunderstanding of the multiple meanings ethics might be one reason that Trump has not established a bioethics commission. Another could be related to the same reason that there is not a science advisor in the White House: These are not issues that particularly interest the chief executive. Plus, Trump seems to only rely on a small group of people—either family or long-term loyalists—and none of them have bioethics aspirations or interest except for Carson. After all, bioethics is not about the deal and it is not about who wins; it is about navigating the moral terrain. The very reasons that he is unlikely to have a commission are the very reasons that he needs one.

Professor Craig Klugman is a bioethicist and medical anthropologist who is chair of the Department of Health Sciences at DePaul University in Chicago. This article was first published in the blog of the American Journal of Bioethics and has been republished with permission.


Sunday, May 28, 2017

I can't say that I agree with Nietzsche on everything, but he was onto something when he wrote, "what does not kill a database makes it stronger". 

We were hit by a bug over the weekend and this mini-Götterdämmerung  has delayed the newsletter. But soon, touch wood, it will be stronger than ever. Thanks, Friedrich. 

Michael Cook

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Opposition to euthanasia is still strong
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The technology is unethical because it supports the false belief that genetic links are essential
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Genene Jones will probably spend life behind bars
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The last bioethics advisory body ended in January 2017
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