Science and Technology Ethics
Technology ethics: Technology ethics comprises values and ethical considerations that should guide regulation and oversight, protect privacy and confidentiality, and require responsible actions in the creation and use of technology.
Science ethics: In science, ethical principles, especially honesty and integrity, should guide all stages of scientific practice—including data collection, peer review, publishing, and replication of findings—to assure that scientific knowledge is unbiased and trustworthy.
From the Bioethics Briefings:
Stem cell research holds great promise for treating conditions such as Parkinson’s disease and diabetes, improving our understanding of genetic illnesses, and answering key questions about human development. This research is ethically controversial because it typically involves the destruction of five-day-old preimplantation human embryos for the derivation of pluripotent stem cells – cells capable of differentiating into all cell types. Critics believe that these embryos have the same moral value as you and I, or at least the potential to develop into humans like us, and therefore destroying them is immoral. While ‘alternative sources’ of pluripotent stem cells have been identified, some scientists suggest that embryonic stem cell research is still necessary to answer key questions related to disease and development. Ethical and regulatory guidelines dictate the research and clinical applications of stem cells. However, their promise and enthusiasm has led to exploitative practices such as the emergence of ‘stem cell clinics’, unregulated businesses which claim to offer innovative treatments to hopeful patients. Dealing with the ethics of stem cell research demands that we wrestle with these and other tough questions. Read our Bioethics Briefing for more.
Human enhancement is any intervention that results in improvements to a person’s physical or cognitive abilities that go beyond the existing range for that person or his/her cohort. Emerging enhancement technologies such as the sophisticated CRISPR-Cas9 genome editing system and cognitive enhancements like neuroprosthetics and brain-computer interfaces have tremendous prospects of benefit to society and newer methods are certain to be developed. Despite this promise, human enhancement raises concerns regarding human rights to dignity, liberty, and equality. Moreover, enhancement has the potential to confer unfair advantage to some groups and, at least initially, is likely to only be accessible to the financially well off, further entrenching disparities. Important issues concerning safety, coercion, and fairness must be addressed if we are to sensibly adopt these technologies. Read the Bioethics Briefing for an overview of the enhancement debate and the important policy considerations relevant to the issue.
Sports enhancement or “doping” is a controversial issue. And while doping in sports is not new, athletes have access to more and more sophisticated methods of enhancement. Some commentators argue that doping is tantamount to cheating. Others support enhancement because it could increase the entertainment value of sport and, they argue, should ultimately be each individual athlete’s personal choice. Indeed, we do not always view enhancement as wrong – biomedical enhancements aimed at improving patient outcomes and saving lives are generally viewed as ethically acceptable, for instance. The question of the wrongness of sports doping, then, depends on what, exactly, is the point of sport. In other words, what do we value in sport? Read our Bioethics Briefing for more.
Nature, Human Nature, and Biotechnology
Moral views about nature—claims that nature or a natural state of affairs has value—are important in contemporary debates about biotechnology. It is often difficult to pin down a precise definition of nature given that what counts as “natural” is not straightforward – many facets of nature have been influenced to some degree by human interaction; does this make them “unnatural”? Such complicated questions are at the heart of many debates related to scientific and technological developments including performance enhancement in sports and the issue of genetically modified crops and livestock. Many who object to these developments criticize them as being unnatural, implying that whatever is natural is preferable and has value. Others disagree about whether such a view is philosophically sound. How can public policy weigh and consider the diversity of perspectives on the moral value of nature? Read our Bioethics Briefing for more.
From the Hastings Center Bioethics Forum:
If movies are one window into the soul of America, “Robot and Frank” has some funny/sad things to say about our current approach to aging. Frank (Frank Langella, as charismatic as ever) is a retired cat burglar, losing his memory and generally deteriorating in his country home. Hunter, his concerned son, brings a robot to take care of him. The robot stays, Hunter says, or else you will have to go to a “memory center.” Despite Frank’s initial resistance, he gets used to the robot and finds some unprogrammed uses for its memory and dexterity skills. Fortunately for Frank, the robot has not been programmed with any moral sense. It knows what stealing is but not that it is wrong. (Note to bioethicists: Here is a job opportunity for the future – programming the capacity for ethical analysis into robots.)
Imperfect Solutions to Driverless Car Dilemmas
Three rules for driverless vehicles were announced by the German Transport Minister, Alexander Dobrindt, in a September 8th interview with Wirtschafts Woche. In English translation the rules are:
(1) “It is clear that property damage takes always precedence of personal injury.
(2) “There must be no classification of people, for example, on the size, age and the like.”
(3) “If something happens, the manufacturer is liable.”
The first and third rules are meant to settle legal and liability concerns. The second speaks to the dilemma of what a driverless car should do when confronted with either striking and killing pedestrians or taking an action that will lead to the deaths of those in the car? While such situations will certainly be unusual, they will occasionally occur, and have taken on significance in the adoption of driverless vehicles. This rule would appear to ban sensors and software in vehicles that could detect and evaluate whether the car was about to strike children rather than senior citizens. It is not specific as to whether the car might, for example, drive off a bridge killing passengers in order to save a larger number of pedestrians.
Is the German rule satisfactory? Is it likely to be adopted by other governments? I think “no” on both counts. Regardless, Dobrindt also announced the creation of an ethics commission to work through the specific of how these rules might be applied for future law.
Fresh Territory for Bioethics: Silicon Valley
Biomedical researchers are increasingly looking to Silicon Valley for access to human subjects, and Silicon Valley is looking to biomedical researchers for new ventures. These relationships could be a boon to medicine, but they also raise questions about how well-informed the consent process is and how securely the privacy of the subjects’ identity and data is kept. Other than a few quotes in the popular press, bioethicists have had little to say on the topic, although those whom I have spoken with agree that more attention is warranted. And so, in the current issue of the Hastings Center Report, I invited readers to write commentaries for Bioethics Forum.
Apple and Google Plan to Reinvent Health Care. Should We Worry?
Wearable devices, social media platforms, and smartphone apps are increasingly being seen as new data sources, capable of capturing complex and continuous personal health information that is relevant to understanding health and disease (see for example here). This trend has opened the way for major consumer tech companies, which have had little interest in health care in the past, to enter the space of medical research. From Apple’s ResearchKit, which allows researchers to carry out medical studies on iPhones, and the company’s reported forays into DNA collection, to Google’s Baseline Study, which aims to paint a picture of “what it means to be healthy” based on data collected on its devices, and Google Genomics, a cloud service for genomes, Silicon Valley is intent on revolutionizing medicine.
Telemedicine Needs Ethical Guidelines
Telemedicine is becoming more widespread. This is care at a distance, where patient and clinician are connected by information technology that may include video, audio, and monitoring equipment linked by computer. Telemedicine has many advantages. It can bring expert care and support to people in remote locations. It can help empower patients by giving them more independence and letting them stay where they are comfortable while still getting good care. It can lower health care costs while providing service that may be even better than what would be available in person. It is convenient– freeing both patient and clinician from in-person visits for routine follow-ups or simple cases in which the diagnosis and treatment are clear.
Regulation of Software as a Medical Device: Opportunity for Bioethics
In January, right before President Biden took office, the Food and Drug Administration proposed permanently exempting “software as a medical device” from regulatory review. The agency waived the approval process last year to streamline regulatory oversight during the Covid emergency. But the growing use of artificial intelligence programs and digital devices in health care raises safety and ethical concerns that require more attention. The Biden administration put the proposal on hold for now. Meanwhile, bioethicists should weigh in as the FDA reviews its action plan.
Why Health Care Organizations Need Technology Ethics Committees
Technology, and technology-caused change, is pervasive in health care. Hospitals and technology companies realize that there is big money in using technology to find information in patient and medical staff data. Companies are rushing to cash in. The Food and Drug Administration has approved more than 40 artificial intelligence-based products for use in medicine, and there are many more deployed or in development that don’t need FDA approval. Tens of thousands of medical phone apps are tracking patients and gathering detailed medical information about them. These new technologies bring new ethical questions that hospitals and other health care organizations are poorly equipped to answer.
Science in the Biden White House: Eric Lander, Alondra Nelson, and the Legacy of Lewis Thomas
At least symbolically, science has replaced populism in the White House. During the Trump administration the portrait in the Oval Office to the left of the Resolute Desk was the populist Andrew Jackson. It has been replaced by one of Ben Franklin. According to the Washington Post, Franklin — along with a moon rock placed on a nearby shelf — is intended to convey President Biden’s deep interest in science and to remind Americans what it can accomplish. At a more substantive level Biden has nominated geneticist Eric Lander, president and founder of the Broad Institute, to be his science advisor and head of the White House Office of Science and Technology (OSTP), elevating the position for the first time to cabinet rank.
Gene Drive Technology: Lessons of the Atomic Bomb
At the age of 15, in August 1945, I heard the radio announcement of the dropping of the atom bomb on Hiroshima. It left an indelible unsettled mark on my memory, never quite matched since. Years later, in 1986, I read Richard Rhodes’s superb book, The Making of The Atom Bomb. I then learned in full just why that bomb meant more to me than I had earlier understood. It not only ended a war, surely a human benefit, but no less left us with a monster threat to human life that will never go away.
Electronic Health Records: Balancing Progress and Privacy
Regardless of the fate of the Affordable Care Act, it has set in motion a drive toward greater use of information technology, particularly with regard to electronic health records (EHRs). These technologies promise to increase the transmission, sharing, and use of health data across the health care system, thereby improving quality and reducing unnecessary costs. But they do not come without raising serious ethical questions, particularly those related to privacy. This was the topic of the 2nd International Summit on the Future of Health Privacy hosted by Patient Privacy Rights at Georgetown Law School on June 6 and 7. The two-day event brought together national and international experts on health privacy, technology, and law; patient advocates; industry experts; and top governmental officials to discuss whether there is an American health privacy crisis.
Should Pandora’s Brain Be Regulated?
The creation of human-like intelligence in a nonbiological being would be the greatest achievement in human history.
Many neuroscientists, computer engineers, and physicists say that just such an achievement will happen. Although their estimates of when this will occur vary, many experts make the case that it is a question of decades, not centuries. In the run up to this development—the implications of which can hardly be imagined—what role should, or could, regulatory regimes play?
Diving Deeper into Amazon Alexa’s HIPAA Compliance
Earlier this year, consumer technology company Amazon made waves in health care when it announced that its Alexa Skills Kit, a suite of tools for building voice programs, would be compliant with HIPAA, the Health Insurance Portability and Accountability Act, which protects the privacy and security of certain health information. Using the Alexa Skills Kit, companies could build voice experiences for Amazon Echo devices that communicate personal health information with patients.
Social Media, Privacy, and Research: A Muddled Landscape
The advent of social media technology has opened many new avenues of research in population health, demographics, psychology, and the social sciences. It is crucial to consider whether researchers conducting observational research using social media need to obtain consent from their research subjects, and whether the current research regulations in the United States establish effective, ethical procedures for obtaining consent for such studies. To determine how to regulate research conducted using social media and the Internet, we must consider whether social media and other digital spaces are public or private domains.
Facebook’s Emotion Experiment: Implications for Research Ethics
Several aspects of a recently published experiment conducted by Facebook have received wide media attention, but the study also raises issues of significance for the ethical review of research more generally. In 2012, Facebook entered almost 700,000 users – without their knowledge – in a study of “massive-scale emotional contagion.” Researchers manipulated these individuals’ newsfeeds by decreasing positive or negative emotional content, and then examined the emotions expressed in posts. Readers’ moods were affected by the manipulation. Of the three authors, two worked at Cornell University at the time of the research; all three are social scientists.
DarkCo Petroceuticals, Angelic Solar Panels, and the SUPPORT Study
As the author of the article that claimed “vindication” for the SUPPORT study, I would like to respond to Professor Latham’s insightful interpretation of the issues in the case. Like Professor Latham, I will not discuss whether the researchers exposed patients to risks that the researchers should have known about or adequately disclosed those risks. And, of course, not being a lawyer, I defer completely to his legal expertise. For me to speculate about a law professor’s interpretation of the law would be as inappropriate as, say, law professors speculating about the best way to treat a premature baby. And I certainly do not want to make that error.
“Poverty Impedes Cognitive Function” – Reason to Help, or Blame, the Poor?
“’The lower the caste,’ said Mr. Foster, ‘the shorter the oxygen.’ The first organ affected was the brain. After that the skeleton.” In Brave New World cognitive ability is carefully and intentionally bred out of the lowest rungs of society. Although he was writing fiction, Aldous Huxley reminds us of an uncomfortable truth about our own society–the poor are sometimes assumed to be less intelligent than people who are well-off. Such thinking comes into play in debates over the value of public assistance programs. If, in fact, the poor are less intelligent, can they be trusted to make good decisions, such as using food stamps to buy healthy food?
Making an Example of Martin Shkreli
Last month, the New York Times reported that the price of a 62-year old little-known drug, Daraprim (pyrimethamine), rose overnight from $18 to $750 a pill. About 100 pills are needed to treat toxoplasmosis, a disease caused by a parasite that lives inside a third of humans but can cause life-threatening infestations in people with AIDS, cancer, or other conditions that compromise the immune system. The eye-popping price increase followed Daraprim’s acquisition in August by Turing Pharmaceuticals, a small drug company founded and led by 32-year old Martin Shkreli, a former hedge fund manager. Shkreli handled the newfound press attention less than gracefully, and quickly became the face of cold-hearted greed in the pharmaceutical industry.
Before We Turn to Digital Contact Tracing for Covid, Remember Surveillance in the Sixties
For three years during the 1960s, I worked for various organizations, all of us trying to end the war in Vietnam. At one point, I was employed by the Fifth Avenue Peace Parade Committee, while my boyfriend worked for the Student Mobilization to End the War in Vietnam (affectionately known as “The Mobe”). Both of these groups were coalitions of organizations that came from various perspectives, everything from Trotskyite to pacifist, but all with the common purpose. Or so we thought.
Cognition Enhancement and Technological Unemployment
One objection to the development of cognitive enhancers is that they are likely to benefit mainly people who can afford to buy them, and that they would put everyone else at a disadvantage. Some philosophers, including Allen Buchanan, Anders Sandberg, and Julian Savulescu, have said that cognitive enhancements would not exacerbate injustice if they were cheap and accessible to all. Taking a look at how advances in information technology (IT) have affected different groups could illuminate the likely effects of cognitive enhancement on different groups.
Big Data, which is derived from a multitude of sources including, social media, “wearables,” electronic health records, and health insurances claims, is increasingly being used in health care and it can potentially improve the way medical professionals diagnose and treat illnesses.
Carefully Precautionary about Synthetic Biology?
A statement released on March 13 by a collection of environmental and other organizations is the latest salvo in a global debate about how far the regulation of synthetic biology should go in endorsing the “precautionary principle.” The statement, titled “Principles for the Oversight of Synthetic Biology,” calls for a broad moratorium on the release and commercial use of organisms developed through synthetic biology.
Despite the Risks, and Because of Them, the FDA Should Permit Recycling Medical Implants
It is hard to quibble with the fact that Dr. Daniel Mascarenhas is breaking the law. It is also hard to quibble with the fact that he is a hero.
The doctor is breaking the law as he tries to find pacemakers from those who have recently died in his Pennsylvania neighborhood to send to India. In India there are many desperately poor persons with cardiac problems that require a pacemaker. They need them but cannot possibly afford to buy one.
De-Extinction: Could Technology Save Nature?
This past November, the International Union for the Conservation of Nature declared the western black rhinoceros of Africa, last seen in 2006, officially extinct. It also concluded that most other rhino species are in danger, even “teetering.” Yet at the same time, over the past year, some scientists and others have been declaring that the woolly rhino – last seen, oh, 10,000 years or so ago – could soon NOT be extinct. Along with a small but growing host of recently expired species, it might undergo “de-extinction”: we could sequence and then synthesize its genome, and then use the genome to synthesize the animals themselves. The work requires a combination of genetic and reproductive technologies. One route would be to extract DNA from a reasonably well-preserved specimen of the ancient animal (several have been found in Siberian ice and one in a Polish tar pit), reconstruct the overall genome, insert the genome into an enucleated egg taken from a living rhino species, stimulate the egg so that it becomes an embryo, and bring the embryo to term in a living rhino. Some first forays have already been taken at the early steps in this process.
Rationality as Understood by a Neanderthal
There is a theory, or the beginnings of a theory, that one of the distinguishing features of modern humans is a kind of irrationality. Obviously, we humans also possess impressive forms of rationality, what with our tool-making, our sciences, our languages, and all the story-telling and philosophizing and culture-building that languages make possible, but the theory is that something about our forms of rationality generates a kind of madness.
He Jiankui: A Sorry Tale of High-Stakes Science
In response to news of the world’s first babies born in China from gene-edited embryos, Sam Sternberg, a CRISPR/Cas9 researcher at Columbia University, spoke for many when he said “I’ve long suspected that scientists, somewhere, would rush to claim the ‘prize’ of being first to apply CRISPR clinically to edit the DNA of human embryos, and use those embryos to establish pregnancies, but still, I’m shocked to find out it’s allegedly happened this quickly.”
When I was a student, I loved to read Freud and Nietzsche and Marx. I was into what the great French philosopher Paul Ricoeur called “the hermeneutics of suspicion.” Sex, power, and money were at work everywhere. So were the psychological and social mechanisms that kept everybody else from seeing beneath the surface: “rationalization,” “denial,” and “false consciousness.”
Citizen Science: Potential Benefits and Ethical Challenges
Why do citizen science projects get started, and what are the ethical challenges facing them? These questions underlie “When Citizens Do Science: Stories from Labs, Garages, and Beyond,” published in Narrative Inquiry in Bioethics, which explores the world of science happening outside the carefully regulated bubble of academic research. “This is not to imply,” writes editor Lisa Rasmussen at the end of her introduction, “that citizen science research is less ethical than conventional research. However, citizen scientists are human, and like past human researchers, may not see or may be tempted to ignore ethical issues in their work that oversight by others might have helped to identify.”
Human Plasma and Bioethics Nationalism
The procurement of human plasma as a potential therapy for Covid-19 is one of the latest examples of bioethics nationalism, defined by Jonathan Moreno in this blog as “distinct bioethics standards [which] are formally proclaimed as a matter of right by a sovereign state.” The race for a Covid cure pushes at the weak seams in the international liberal order in much the same way that Covid appears to be pushing at health care systems.
Of Kinks, Crimes, and Kinds: The Paraphilias Proposal for the DSM-5
When is a kinky interest really sick?
That’s the central question the Paraphilias Sub-Work Group of the American Psychiatric Association has had to face as they’ve developed proposed revisions for the DSM-5. Pity those given the task of trying to figure out how, when, and why to medicalize or de-medicalize everything from asexuality to zoophilia (the latter being the sexual interest known to less progressive types as bestiality).
He Jiankui’s Genetic Misadventure, Part 3: What Are the Major Ethical Issues?
In their single-minded venture of “producing” (shengchan, in their own word) the world’s first gene-edited babies, He Jiankui and his associates have posed numerous and daunting ethical challenges to China and the world. They can be mapped or identified through these four categories:
- typical problems related to research ethics;
- broader political, socio-cultural, and transcultural issues;
- fundamental ethical questions on the use of gene editing in human reproduction itself; and
- even more fundamental matters on the moral goals of science and technology.
Different levels of ethical issues should be explored in an interconnected and interdisciplinary approach, but it is important to note that ethical soundness on one dimension does not mean moral justification on any other level or dimension.
A team of scientists announced this week that it had successfully created one of the sixteen chromosomes found in yeast cells, marking a meaningful step forward in that part of genetic engineering dubbed synthetic biology. This is the first time an entire chromosome has been synthesized. Moreover, the chromosome was heavily edited, not simply copied from nature. According to a story in The Scientist, the researchers deleted some genes, changed others, and added still others in order to facilitate the synthesis and make it easier for researchers to alter the genome in still other ways later on. In spite of the extensive changes, yeast cells containing the synthetic chromosome apparently function normally, which in itself is scientifically interesting because it sheds light on the degree to which genomes can be changed without rendering them nonfunctional. Given all this, the research is a notable advance in synthetic biology of eukaryotic organisms.
When Might Human Germline Editing Be Justified?
Last month, an international commission convened to consider whether and how germline editing – changing the genes passed on to children and future generations — should proceed. The discussions focused mainly on the safety risks of the technology, which, while important, are not the only issues to consider. Any conversation regarding germline editing must also honestly and thoroughly assess the potential benefits of the technology, which, for several reasons, are more limited than generally acknowledged.
Chinese Bioethicists Respond to the Case of He Jiankui
A preliminary investigation by Guangdong Province in China of He Jiankui, the scientist who created the world’s first gene-edited babies, found that “He had intentionally dodged supervision, raised funds and organized researchers on his own to carry out the human embryo gene-editing intended for reproduction, which is explicitly banned by relevant regulations.” As bioethics scholars in China, we would like to comment on the findings, as well as on three commentaries by Jing-Bao Nie and coauthors that appeared in Bioethics Forum, “He Jiankui’s Genetic Misadventure” (part 1, part 2, and part 3).
June 7, 2021, was a bad day for science. That was the day the U.S. Food and Drug Administration approved aducanumab for the treatment of Alzheimer’s disease, even though a committee of its own selected experts recommended strongly against approval. The committee found that studies failed to prove the medicine works, or that its benefits outweigh side effects, which include swelling and bleeding in the brain. In a break from precedent, the FDA did not accept its committee’s recommendation, but delayed its decision for months, culminating in an announcement of approval.
The Only PhD Scientist in Congress Speaks About Truth, Politics, and Human Flourishing
At a time when facts are distorted, disregarded, and ignored in policy making and political discourse, the need in Washington for seekers and defenders of truth has perhaps never been greater. I discussed the state of affairs with Representative Bill Foster, a Democrat from Illinois who prides himself on being the only PhD scientist currently serving in the U.S. Congress.
Xenotransplantation: Three Areas of Concern
News of the first transplant of a pig’s heart into a human was widely reported last week, raising hope that the procedure could one day help alleviate the shortage of organs. In decades of experimentation with xenotransplantation, the transplantation of organs from one species to another, no human recipient of a nonhuman organ has survived for more than a few months. Most have died within hours or days from rejection, infection, or both. Like the recipient of the pig’s heart, many previous patients were dying and were not eligible for an organ transplant through conventional channels. But before we forge ahead with clinical trials of xenotransplantation we should be concerned about several issues: the potential to spread pathogens, exploitation of human research participants, and animal welfare.
Globalized Science in a Deglobalizing World
The arrest of Harvard chemist and nanobiologist Charles Lieber on charges of lying about his research funding from China encapsulates two phenomena currently in tension: the global nature of modern science and attempts to nationalize the fruits of science.
Wrongful Death Suits for Frozen Embryos: A Bad Idea
Last March, 4,000 frozen eggs and embryos were lost at University Hospitals Fertility Center in Cleveland when the temperature in cryogenic tanks spiked due to human error. Officials at University Hospitals have apologized repeatedly to the affected patients, and say that they are working to provide refunds, free services, and “emotional support.” A similar incident also occurred last March at Pacific Fertility Center in San Francisco when a storage freezer malfunctioned. These incidents have resulted in dozens of lawsuits. The most controversial seek to have embryos classified as “persons” in order to sue the clinics for wrongful deaths.
Individuals Declared Brain-Dead Remain Biologically Alive
A remarkable experiment was reported last week in which a kidney from a genetically modified pig was attached to blood vessels in a brain-dead individual, with the family’s consent. In the study, hailed as “a huge breakthrough,” the pig’s kidney functioned normally, suggesting the future feasibility of successfully transplanting organs from pigs into human beings. This research raises a host of ethical issues, including the ethics of xenotransplantation. Here I focus on the implications for the status of individuals declared brain-dead, or dead by neurological criteria, who are unable to breathe spontaneously and are being maintained in hospitals with the aid of mechanical ventilation.
Motivated Ignorance: A Challenge for Science Communication and Democracy
Successful decision-making within a democracy depends on an informed electorate. It is both depressing and alarming, then, that studies of political knowledge among the general population reveal a consistent lesson: The public is often ignorant and misinformed when it comes to basic matters of fact and issues of scientific consensus.
Chinese Bioethicists: He Jiankui’s Crime is More than Illegal Medical Practice
Professionals and the public in China first learned of the jail sentence of He Jiankui from the report of Xinhua News Agency. No information, including any interpretation, was provided by the Court. But the reported words of the sentence are so ambiguous as to leave room for different interpretations. We believe that the public has the right to know more than Xinhua News Agency reported.
Lincoln’s Promise: Congress, Veterans, and Traumatic Brain Injury
Perhaps we were naïve. Our plan was relatively simple: we would chart the legislative evolution of programs for veterans with traumatic brain injuries (TBI) to identify policy gaps for this underserved and vulnerable population. With recent media attention highlighting the U.S. Department of Veteran Affairs (VA) shortfalls for TBI – the “signature injury” of the wars in Iraq and Afghanistan – we hoped to learn whether barriers to care stemmed from a lack of congressional will or operational problems at the VA.
What’s Truly Outrageous About Intersex?
On August 5, 2017 the World News Daily Report published an article that has been circulating on my Facebook newsfeed every day since: “Hermaphrodite Impregnates Self, Gives Birth to Hermaphrodite Twins.”
Never mind that at the bottom of the webpage, the World News Daily Report publishes the following disclaimer: that it “assumes all responsibility for the satirical nature of its articles and for the fictional nature of their content. All characters appearing in the articles in this website — even those based on real people — are entirely fictional and any resemblance between them and any person, living dead or undead, is purely a miracle.”
Not since Rene Descartes gazed from his garret window in early 17th-century Paris and wondered whether those were men or hats and coats covering “automatic machines” he saw roaming the streets has the issue of personal identity and your cranium been of such import. Descartes feared a world that he alone occupied due to deception by the devil. Today we face a different mind-body challenge in the form of a devil we know: Italian neuroscientist Sergio Canavero. He recently announced that the first human head transplant is imminent.
New Hope for Detecting Consciousness in Vegetative Patients: Ethical Implications
Patients diagnosed as being in a persistent vegetative state have figured prominently in the law and medical ethics relating to end-of-life decisions since the case of Karen Quinlan in 1976. These patients have profound brain injuries that leave them in the seemingly anomalous condition of being awake but not aware. They have normal sleep-wake cycles and the capacity to breathe on their own, but lack clinical signs of consciousness. Recent scientific developments that suggest signs of willful modulation of mental activity have roiled the waters relating to the care of patients in a vegetative state.
A recent editorial in Nature lauds the U.S. government for its efforts to promote open communication between government scientists and journalists, but it condemns the Canadian government for its opposing efforts to limit what federal scientists can freely communicate to journalists. The Nature criticisms of the Harper government are well-founded. But the problem for science in Canada extends far beyond the “tightening of media protocols for federal scientists and other government workers.” More worrisome is the now dominant philosophy of trickle-down economics for science which drives science funding in this country.
A Narrow Path for Optimism that Social Genomics Can Combat Inequality
In his recent piece, “The genes we’re dealt,” Erik Parens puts his finger on cause for concern with what he calls social genomics: while progressives can use insights from this new field to justify combating inequality, conservatives can use them to justify the existence of that same inequality. This pessimistic conclusion—which Parens argues convincingly for—follows from a focus on insights at the societal level, that of a whole population. But there are grounds for optimism by focusing instead on potential insights from social genomics derived from local-level comparisons between different environments. Such insights could point to interventions that progressives and conservatives might just be able to agree on.
The Need for Open and High Quality Preclinical Science
An investigative report The BMJ published recently about a failed tuberculosis vaccine trial conducted with infants in South Africa underscores several issues in translational science that are gaining increased attention: low standards in the rigor, reporting, and transparency of preclinical research.
He Jiankui’s Genetic Misadventure, Part 2: How Different Are Chinese and Western Bioethics?
When the world’s first research on editing the genes of human embryos by Chinese scientists was published in an international journal in 2015, a report in the New York Times characterised the key issue involved as “a scientific ethical divide between China and West.” Earlier this year, an article in the magazine Foreign Policy by a researcher with Chinese origin put it bluntly that “China will always be bad at bioethics.” Now, He Jiankui’s announcement on gene-edited babies appears to provide more compelling evidence that China is the “radical other” of the West, a wild land where bioethics matters little.
Do You Want the Police Snooping in Your DNA?
In late April, 2018 a suspect thought to be the Golden State Killer, a man who had eluded police for decades after committing a string of murders and rapes in Northern California and Orange County between 1976 and 1986, was identified on the basis of DNA evidence. Although we celebrate the dogged pursuit of a more than 30-year-old cold case, the episode has drawn public attention to the evolving ways in which law enforcement is using genetic data to identify suspects—and to the consequent risks to the privacy of genetic data.
We have long had the ability, we humans, to work outside the bounds of evolution. Dairy cattle, maize, and all sorts of dog breeds attest to that. It is unlikely that natural evolution alone would have produced these things. They depended on human intervention. However, in the past, the scope of human intervention was rather limited. The newly emerging tools for genome editing are widely thought to mark a significant advance in our ability to get what we want out of nature. We seem to be challenging evolution head on, maybe trying to render it obsolete. For those environmentalists or conservationists who want to limit the human alteration of nature, the challenge to evolution posed by genome editing looks like an awful new threat and raises telling questions. What should be the proper relationship between humans and the biological evolution of life on Earth? From the standpoint of care and concern for the natural world, a desire to protect nature from human encroachment, how should we think about gene editing technologies?
But not always. And that’s kind of the point.
OK, let me back up.
Like that bad-for-you ex from whom you just can’t seem to make a clean break, the “news” story about how the feds fund questionable sex studies has come back a-knockin’ at the door. We’re supposed to be totally horrified that our tax dollars are going to fund studies that find out what turns people on and what makes people loose.
Fake News: A Role for Neuroethics?
Fake news proliferates on the internet, and it sometimes has consequential effects. It may have played a role in the recent election of Donald Trump to the White House, and the Brexit referendum. Democratic governance requires a well-informed populace: fake news seems to threaten the very foundations of democracy.
Synthetic Biology: A Study in Reinvention
An article in the October issue of Discover Magazine has a great line from Drew Endy, a bioengineer at Stanford University who has become one of the foremost public figures in the field of synthetic biology. It’s not his comment about how, someday, synthetic biology might allow us to create a modified fungus that can turn a can of sawdust into a computer, although I understand why that caught the interviewer off guard. Great lede, but Endy has been saying things like that for years. Nor is it anything about the overall vision he offers of synthetic biology: the generation of standardized genetic parts that predictably do what they are designed to do and can be strung together in larger assemblies—in effect, genetic programs that can in turn be inserted into fungi, yeast, or bacteria cells and cause them to carry out the designer’s bidding without the designer even having to know very much about the underlying biology. Nope. Familiar stuff, all that.
Sacred versus Synthetic? Nature Preservationism and Biotechnology
One of the long-term contributions of Earth Day is that it offers a regular, semi-official reminder that a sense of the sacred is a vital part of environmentalism. The spirit of John Muir lives on in the notion of “Respect for the land” that was emphasized in the famous Keep America Beautiful public service announcement that was launched on the first Earth Day. But in the era of biotechnology, the notion of sacredness can pull in other directions.
On Monday, New America Foundation in Washington, DC held a thought-provoking event, My Brain Made Me Do It, which explored the role of neuroscience in understanding human behavior, particularly that of criminals, and the extent to which such research can or should be used in the criminal justice system. The program was the latest installment in the Future Tense partnership between New America Foundation, Slate magazine, and Arizona State University to “explore emerging technologies and their transformative effects on society and public policy.”
Doping, Corruption, and International Intrigue: Olympic Sport Confronts a Moral Crisis
I suspected the two alibi witnesses were lying. The accused in the case, Alexei Melnikov, coached long distance walkers and runners for ARAF, the All-Russia Athletic Federation. Lilya Shobukova and her husband testified that they handed over 150,000 Euros in blackmail money to Melnikov in Moscow in January 2012. He alleged this was impossible because he was in Sochi, 1,000 miles away on that day. He’d driven there, he said, so that he could bring along supplies and equipment. The witnesses’ statements aligned with Melnikov’s account. Yes, he was with them in Sochi that day. They were even able to recall, three years later, what he’d delivered.
Olympic Problems with Sex Testing
Ah, Beijing, where men are men and women are… women until proven otherwise. As reported in the New York Times, “Organizers of the Beijing Olympics have set up a sex-determination laboratory to evaluate ‘suspect’ female athletes.” According to the Times, “only athletes whose gender has been questioned will be tested in Beijing.” This approach betrays fuzzy-headed thinking of – well, of Olympic proportions. So I’m laying out here my questions to the Olympic officials involved in this business, in the hopes someone on the inside will send them along.
Why College Students Use Cognitive Enhancers: It’s Not Only about Grades
As the school year winds down, it’s safe to assume that many college students used stimulants such as Ritalin and Adderall to get through finals. While the students may have been motivated to improve their odds of getting good grades, a new study suggests that students’ reasons for taking stimulants aren’t so blatantly opportunistic.
In 2008, The President’s Council on Bioethics turned to Immanuel Kant and his deontological philosophy as a resource for deliberations on contemporary bioethical issues. The report focused on Kant’s understanding of human dignity, and his deduction that the value of a human is intrinsic. The Council ultimately asserted that according to Kantian moral philosophy, worth is also inherently attributed to the physical being of an individual, which “argues for humility when confronted with new opportunities for . . .’enhancements’ of the human organism.” Essentially, Kant condemns attempts to surpass what might be called natural function, attempts typically described as transhumanist efforts. From this, it can be concluded that Kant may disagree to some extent with the aims of modern orthodontics.
We Should Be Concerned About Athletes Having to ‘Dope Down’
Last week, the Court of Arbitration for Sport rejected an appeal by South African runner Caster Semenya that challenged the International Association of Athletic Federation’s proposed regulations that women like her with atypically high levels of testosterone must take medication to reduce testosterone levels in order to compete in certain events.
The Winter Olympics and the Doping Ecosystem
“It is going to be very hard for all the clean athletes to see that the Russians are doping and they are going to walk away, run away with all the medals and you can’t do anything about it.” – Arthur Liu, parent of USA figure skater Alysa Liu on the decision to allow 15-year-old Russian skater Kamila Valieva to compete in the Winter Olympics despite a positive doping test.
Medicine Needs a Declaration of Independence from Cosmetic Procedures
What is medicine for? I found this question on my mind recently, not only because I had been discussing it with a group of thoughtful medical students to whom I was teaching the history of medicine, but also because I was shopping for a bra at Bloomingdale’s. On my lunch break, I found myself alongside a mother buying her teenage daughter new bras. The girl needed new bras, because her mother had just bought her new breasts. The mother’s loud bragging about the surgeon’s finery had me cringing in the dressing stall. Is this what medicine is for? Mamas boasting about their babes’ boobs? I don’t think so. I’m not naïve; as an historian of medicine, I know that medicine has always advanced itself by offering improvements of patients’ social status, primarily by making patients healthier, but also by legitimizing their complaints.
Sports Concussions and Sandbagging
Sport-related concussions are a significant public health problem, and concussion management is one of the most controversial issues in sports medicine. The latest international consensus statement on concussion in sport advises that players not return to play on the same day they were injured and that they not return until they are asymptomatic. But it can be difficult to make an accurate on-field diagnosis of concussion and to determine when an athlete’s symptoms have completely resolved.
Caster Semenya and the Challenges of Sports Brackets
“Sport is the display of the virtuous perfection of natural talents.” So writes Tom Murray, president emeritus of The Hastings Center, in his recent book Good Sport: Why Our Games Matter—and How Doping Undermines Them. If virtuous perfection of natural talents is what sports is all about, sports needs more people like Caster Semenya, the South African middle distance runner who has won multiple gold medals in the women’s 800 meters in international events. But Semenya has now been declared ineligible for any future women’s middle distance events unless she takes medications to suppress her testosterone levels. Semenya’s testosterone levels are naturally high, significantly higher than is typical for women, and too high, according to the Court of Arbitration for Sport, to compete in the women’s bracket for middle distance running.
Intersex and Sports: Back to the Same Old Game
If you’re trying to make sense of the “decisions” just made in Miami about sex-typing in sports, and you’re struggling, join the club. The International Olympic Committee (IOC) presumably tasked the group of expert physicians who just met in Miami with the job of coming up with a fair way to decide who should be allowed to compete as a woman in cases of sex ambiguity. Instead, the group “did not address fairness” according to Dr. Joe Leigh Simpson of Florida International University. What the group did apparently conclude is this: anomalous sex is always primarily a medical condition, athletes must submit to “treatment” if they want to compete, and expert doctors will play by an “I know it when I see it” approach as these doctors personally decide, on a case-by-case basis, who will and won’t compete.
An unusually lengthy and undoubtedly expensive 90-second commercial for Androgel aired during men’s swimming and volleyball events in NBC’s coverage of the Olympics. The ad touts Androgel 1.62%, a more concentrated formulation of Abbott Laboratories’ testosterone treatment, and starts by addressing “the millions of men who have used Androgel 1%.”
Millions of men may have used Androgel, sales of which were $874 million last year in the United States. But many of the product’s consumers probably do not need this potent hormone. Testosterone treatment can be beneficial in cases where men have missing or damaged testes, but it seems unlikely that this population numbers in the millions. So, whom exactly is this particular commercial targeting?