The Genetics (and Ethics) of Making Humans Fit for Mars

Jason Pontin
www.wired.com
Originally published August 7, 2018

Here is an excerpt:

In the first stage of his plan, Mason is combining human cells with a gene called Dsup, unique to the indestructible tardigrade, that suppresses DNA breaks from radiation. Tardigrades can survive the vacuum of space; perhaps their genes might make us more fit for space, too. His lab has also created an artificial construct of the gene p53, involved in preventing cancer, which it hopes later to insert into a human cell. Elephants have many copies of p53 and seldom die from cancer; adding copies of p53 to human genomes might protect us from space radiation. Mason’s less speculative research includes editing Deionococcus radiodurans, sometimes called “Conan the bacterium,” a polyextremophile that can survive cold, dehydration, acid, and very high levels of radiation, the last by rewriting its damaged chromosomes. Mason wants the microbe to live as flora on our skin or in our guts, or on the surfaces of spaceships, protecting us from the deadly rays of space. “The microbiome is an extraordinarily plastic thing,” he says.

Some researchers have proposed more science-fictional projects. Harris Wang of Columbia wants to coax human kidney cells to synthesize the nine amino acids our bodies cannot make. A human cell able to synthesize all the organic compounds needed for health would require around 250 new genes, but if our tissues were made of such cells, astronauts could thrive by drinking just sugar water, a liberating adaptation: Missions wouldn’t have to lug bulky food or send it on ahead. Other scientists have suggested photosynthetic spacefarers, or editing the personalities of the space corps, so that they fearlessly longed for the high frontier because it was their true terminus.

The info is here.

The ethics of experimenting with human brain tissue

Nita Farahany, and others
Nature
Originally published April 25, 2018

If researchers could create brain tissue in the laboratory that might appear to have conscious experiences or subjective phenomenal states, would that tissue deserve any of the protections routinely given to human or animal research subjects?

This question might seem outlandish. Certainly, today’s experimental models are far from having such capabilities. But various models are now being developed to better understand the human brain, including miniaturized, simplified versions of brain tissue grown in a dish from stem cells — brain organoids. And advances keep being made.

These models could provide a much more accurate representation of normal and abnormal human brain function and development than animal models can (although animal models will remain useful for many goals). In fact, the promise of brain surrogates is such that abandoning them seems itself unethical, given the vast amount of human suffering caused by neurological and psychiatric disorders, and given that most therapies for these diseases developed in animal models fail to work in people. Yet the closer the proxy gets to a functioning human brain, the more ethically problematic it becomes.

The information is here.

When Medicine Is Futile

By Barron Lerner

The New York Times

Originally published September 18, 2014

Here is an excerpt:

The medical futility movement, which argued that doctors should be able to withhold interventions that they believed would merely prolong the dying process, did not experience great success. Physicians declaring things to be “futile” sounded too much like the old system of medical paternalism, in which doctors had made life-and-death decisions for patients by themselves. It was this mind-set that bioethics, appropriately, had sought to correct. Patients (or their families) were supposed to be in charge.

The problem was that the new system did not account for one thing: Patients often demanded interventions that had little or no chance of succeeding. And physicians, with ethicists and lawyers looking over their shoulders, and, at times, with substantial money to be made, provided them.

The entire article is here.

At Issue in 2 Wrenching Cases: What to Do After the Brain Dies

By BENEDICT CAREY and DENISE GRADY
The New York Times
Originally posted January 9, 2014

In one way, the cases are polar opposites: the parents of Jahi McMath in Oakland, Calif., have fought to keep their daughter connected to a ventilator, while the parents and husband of Marlise Muñoz in Fort Worth, Tex., want desperately to turn the machine off. In another way, the cases are identical: both families have been shocked to learn that a loved one was declared brain-dead — and that hospital officials defied the family’s wishes for treatment.

Their wrenching stories raise questions about how brain death is determined, and who has the right to decide how such patients are treated.

The entire story is here.

Bioethicists must not allow themselves to become a 'priestly caste'

The increasing use of expert bioethicists has profound anti-democratic implications

By Nathan Emmerich
The Guardian - Political Science Blog
Originally published May 18, 2013

In a secular age it might seem that the time for moral authorities has passed. However, research in the life sciences and biomedicine has produced a range of moral concerns and prompted the emergence of bioethics; an area of study that specialises in the ethical analysis of these issues. The result has been the emergence of what we might call expert bioethicists, a cadre of professionals who, while logical and friendly, have, nevertheless, been ordained as secular priests.

This suggestion – that there are expert bioethicists – might appear to have profoundly anti-democratic implications. Indeed handling expertise, including scientific expertise, is a central difficulty for democratic societies and its extension into the realm of moral values seems, on the face of it, to compound the problem. Nevertheless the Human Fertilisation and Embryology Authority (HFEA) has constantly made use of expert bioethicists and two members of the recently convened Emerging Science and Bioethics Advisory Committee (ESBAC) are listed as "bioethics specialists".

If we are to govern the biosciences and medical practice effectively there seems to be increasing need for expert bioethicists. Nevertheless, there is a different dynamic to the politics of bioethical expertise precisely because the opinions of bioethical experts cannot be used to obviate those of other moral agents.

This might seem like an odd claim. If there are expert bioethicists surely we should prefer their opinions to those of non-experts? However this is to assume bioethical expertise is modelled on scientific expertise. The idea of the scientist as expert is so strong we often forget that there are other forms of expertise.

The entire post is here.

Say twenty hail Autonomy’s and reflect on what you have done – bioethicists as having some, but not priestly authority

By David Hunter
BMJ Group Blogs
Originally published May 17, 2013

Nathan Emmerich, occasional commentator here at the JME blog has recently published an interesting piece in the Guardian which argues against us taking bioethicists as having a particular type of expertise. While I enjoyed and agree with much of what he argues I do have a couple of quibbles – in particular I worry that the emphasis on inclusiveness and democracy could in effect lead to the exclusion of the bioethicist, which I think would be a mistake.

The type of expertise he argues against bioethicists having is basically what I will refer to as authoritative expertise – someone who has authoritative expertise in a particular field ought to be deferred to when there is a disagreement – their opinion is “better” than ours as lay decision makers. So for example when deciding how long an object is, and whether it will fit in the boot of our car, we ought to defer to the chap with the tape measure, since their measured judgement is better than ours.

I use this example for a reason – Emmerich focuses on knowledge based expertise (no doubt because it is easier to explain to the lay public…) but this isn’t the only form of expertise that warrants some deference there is also expertise which is performative (in this case the act of measuring well). I’m inclined to think that if bioethicists deserve any deference it will be due to their performative expertise, rather than their knowledge.

Emmerich suggests however that bioethicists should not be taken as having authoratative expertise because he thinks knowledge about morality is more like knowledge about aesthetics than knowledge about facts. Hence we ought to give no more weight to the bioethicists opinion about an ethical issue, than we do someone heavily steeped in the Art’s worlds opinion about a piece of modern art – they have a “sophisticated” view but that doesn’t tell me what I should think about the piece.

(cut)

I think the bioethicist is in a position to contribute something useful to such deliberation, debate and discussion in two ways, both of which require some expertise – even if it is not totally authorative expertise. The first way is this, the bioethicist I assume will have access to more knowledge both about what has been argued in regards to ethical theory and in regards to moves in applied ethics. Knowing these moves can short-cut some discussion and debate by showing paths that will lead nowhere – the implications and consequences of particular arguments.

The entire response is here.

Michael Shermer on morality

by Massimo Pigliucci
edge.org
Originally published on January 21, 2013

Oh my, I thought I was done for a while chastising skeptics like Sam Harris on the relationship between philosophy, science and morality, and I just found out that my friend Michael Shermer has incurred a similar (though not quite as egregious as Harris’) bit of questionable thinking. As I explained in my review of Harris’ book for Skeptic, one learns precisely nothing about morality by reading The Moral Landscape. Indeed, one’s time on that topic is much better spent by leafing through Michael Sandel’s On Justice, for example. Anyway, apologies for the repetition, but here we go again. (For a fuller explanation of how I think moral philosophy works, see here; on science and philosophy here and here. For how the whole philosophy-science-morality shebang hangs in, take a look at chapters 2, 3, 4 and 5 of Answers for Aristotle.)

Michael begins his piece by complaining that scientists have “conceded the high ground of determining human values, morals, and ethics to philosophers,” and arguing that this was a mistake. Indeed, Shermer says that such concession (when did it happen, by the way? Did the National Academy of Science pass a resolution under pressure from the American Philosophical Association?) comes at the worst time because new scientific tools and discoveries are gonna finally tell us from where we ought to get our values.

What are these tools? They include evolutionary ethics and neuroethics, among other fields. Now imagine that Michael had been talking about math instead of ethics. The idea would run something like this: “Scientists have conceded the high ground of resolving mathematical problems to mathematicians, just when the new disciplines of evolutionary mathematics and neuro-mathematics are coming on line.” My point is, I hasten to say, not that ethics is like math, but rather that evolutionary math and neuro-math would be giving us answers to different questions. An evolutionary approach to understanding our ability to reason mathematically could give us clues as to why we are capable of abstract thinking to begin with, which is interesting. “Neuro-mathematics” could then provide answers to the question of how the brain works when it engages in mathematical (and other types of abstract) thinking. But if you want to know how to prove Pythagoras' theorem, neither evolutionary biologists nor neurobiologists are the right kind of experts. You need a mathematician.

The entire blog post is here.

A Clinical Trial and Suicide Leave Many Questions: Part 4: The University of Minnesota’s Response

By Judy Stone | January 8, 2013
Scientific American

Demystifying drug development, clinical research, medicine, and the role ethics plays

In earlier posts, we’ve looked at issues of consent, investigator responsibilities, and conflicts of interest on the case of Dan Markingson’s suicide while participating in a clinical trial of anti-psychotics at the University of Minnesota. This time, we turn to the University’s response.

 Not surprisingly, the University has claimed it has no responsibility for any wrongdoing—that in fact, no wrongdoing even occurred. But there are some inconsistencies in the story and unanswered questions. There is also concern over how the University has responded to criticism. We’ll examine these issues in this post.

Background regarding the University’s response

In response to the Minnesota Board of Social Work’s “corrective action” vs. Jeanne Kenney, the social worker/study coordinator who did most of the study assessments on Markingson, the UMN’s General Counsel Mark Rotenberg stated, “As we’ve stated previously, the Markingson case has been exhaustively reviewed by federal, state and academic bodies since 2004. The FDA, the Hennepin County District Court, the Minnesota Board of Medical Practice, the Minnesota Attorney General’s Office and the University’s Institutional Review Board have all reviewed the case. None found fault with the University. None found fault with any of our faculty. Most importantly, none found any causal link between the CAFE trial and the death of Mr. Markingson.”

Yet a number of UMN faculty have remaining concerns and have requested an independent investigation. Two years ago, eight faculty members in the Bioethics Department wrote Rotenberg, citing the University’s conflicts of interest in the matter. The UMN declines to reexamine the case, saying that they have been exonerated. In October 2012, Dr. Carl Elliott, Professor in the UMN Center for Bioethics, wrote Dr. Debra DeBruin, director of the Clinical Research Ethics Consultation Service for the UMN Clinical and Translational Science Institute, again requesting a review. This time Dr. Elliott expressed concern regarding human subjects protections in other trials conducted by the psychiatry department as well. As always, Dr. Elliott’s concerns were thoroughly documented. Once again, the University has turned away.

The entire story is here.

Thanks to Tom Fink for this story.

Human Enhancements at Work Pose Ethical Dilemmas

By Kate Holland
Reuters Health Information
Originally published November 8, 2012


Retinal implants to help pilots see at night, stimulant drugs to keep surgeons alert and steady handed, cognitive enhancers to focus the minds of executives for a big speech or presentation.

Medical and scientific advances are bringing human enhancements into work but with them, according to a report by British experts, come not only the potential to help society and boost productivity, but also a range of ethical dilemmas.

"We're not talking science fiction here, we're talking about advances that could impact significantly on the way we work...in the near future," said Genevra Richardson, a professor of law at Kings College London and one of the authors of the report.

The report was published after a joint workshop involving four major British scientific institutions which looked at emerging technologies like cognitive enhancing drugs, bionic limbs and retinal implants that have the potential to change workplaces dramatically in future.

Richardson said while such developments may benefit society in important ways, such as by boosting workforce productivity, their use also had "significant policy implications" to be considered by governments, employers, workers and trades unions.

The entire article is here.

HCEC Pearls and Pitfalls: Suggested Do’s and Don’t’s for Healthcare Ethics Consultants

Joseph A. Carrese and the Members of the
American Society for Bioethics and Humanities
Clinical Ethics Consultation Affairs Standing Committee


1. Don't assume that the question you are asked to address is a matter of ethics, or that it is the primary issue or the only issue. Do take the time to clarify for yourself (and your team) the following: What are the relevant concerns, and are they a matter of ethics?

Those requesting an ethics consultation recognize that a problem exists. However, they may not be able to accurately determine whether the problem is truly a matter of ethics or not, and even if they can, they may not be able to correctly articulate the precise nature of the ethical concerns (that is, the values about which there is uncertainty or conflict). Further, requesters may not appreciate that, in addition to the question(s) they have raised, other important ethical concerns may be involved. One important task for HCECs, then, is to determine if the request is appropriate for ethics consultation and, if so, to clarify the ethical concern(s). 1 If the request does not involve an ethics question (that is, what should be done in the face of uncertainty or conflict about values), it should be referred to other resources in the healthcare system that are better equipped to handle such requests. For example, if the requester is seeking a legal opinion, he or she should be referred to legal counsel. Similar to making a diagnosis in clinical medicine, where precision in diagnosis leads to appropriate intervention, clearly and accurately identifying and describing the ethical concerns in an ethics consultation will more likely lead to a correct and helpful analysis and appropriate recommendations. Another parallel to clinical medicine is that, as the case unfolds over time, new issues may emerge. An initial set of questions, even when addressed and resolved, may lead to awareness of new ethical issues as the case evolves. The consultant should be attentive and open to this possibility and revisit the ethics question(s) in the consultation, as needed.

The other 11 suggestions are here.

Thanks to Ken Pope for this article.

Do Bioethics Really Matter?

By Arthur Kaplan

Book Review published in The Lancet

Malignant: Medical Ethicists Confront Cancer by Rebecca Dresser

Originally published April 14, 2012

Malignant is a book that I am sure will catch the eye of many readers of this journal. Not because it is a collection of essays by people who have either had cancer or who cared for loved ones who did. Many books cover that ground. Not because it is a collection of essays by distinguished American bioethicists, including Norman Fost, Leon Kass, Daniel W Brock, and Rebecca Dresser. There are lots of bioethics collections authored by eminent scholars around too. This book will command attention because the bioethicists writing the essays are also the very same people who had the cancer or helped loved ones who did.

The book thus raises the obvious question—in facing cancer, did the contributors fare any better for all their scholarly expertise in bioethics? Or, did cancer prove to be the great leveller, leaving all who talk for a living about moral theory and normative argument tongue-tied as each learned what the real world of serious sickness is all about? Did careers of offering opinions to others in and out of health care about how to behave, speak, and respond make a whit of difference to the personal experience each of the contributors had in their own intimate struggles with cancer?

The entire review is here.