The Need for an Economic Bioethics

abstract visuals of economics

By Mark Robinson

As the animations of markets increasingly shape the timbre and character of medicine, scholars studying ethical issues in health and medicine must be increasingly attentive to the role of market forces as they shape modern health care.

For those interested in the social, ethical, and conceptual dimensions of contemporary health and medicine, there has been a sustained focus on a key set of important challenges; how do we ensure adequate access to health for marginalized and global populations? What are the social and ethical implications of emergent technologies? How are issues of consent articulated in the everyday interactions of the clinic? What are our obligations to persons in terms of end-of-life care? These longstanding concerns regarding access, new technologies and the rights of patients comprise the major thrusts and foci of bioethics, health care ethics, and associated areas of inquiry.

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‘Big Data, Health Law, and Bioethics’ Examines the Intersection of Major Issues in Health Care

When data from all aspects of our lives can be relevant to our health – from our habits at the grocery store and our Google searches to our FitBit data and our medical records – can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? A new timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.

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Can a national conscience be gene edited?

By Paul C. McLean

Gene editing is at once promising and perilous. Or, as John Oliver said in a recent episode of his news show, it is ”either going to kill all disease or kill every last one of us.”

The Nuffield Council on Bioethics is not as amusing as John Oliver, and unlike the summer film “Rampage,” its new gene editing report features neither The Rock nor a genetically modified, 30-foot wolf.

But if you want to understand what we may actually be getting ourselves into, England’s de facto national bioethics commission has produced a useful roadmap for educating the public and addressing concerns. It may the summer read you’ve been looking for.

And if there’s a gene splicer for envy, I’m ready to be CRISPR’d.

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Hastening Death to Avoid Prolonged Dementia

By Norman L. Cantor

The scourge of Alzheimer’s is daunting. For me, the specter of being mired in progressively degenerative dementia is an intolerably degrading prospect. One avoidance tactic — suicide while still competent — risks a premature demise while still enjoying a tolerable lifestyle.

The question arises whether an alternative tactic — an advance directive declining all life-sustaining intervention once a certain point of debilitation is reached — might be preferable as a device to avert a prolonged, unwanted limbo.

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A data set that looks like America

By Oliver Kim

May marks the annual Asian American and Pacific Islander Heritage Month, which recognizes the history and contributions of this diverse population in the United States. Accounting for that diversity though is one of the challenges facing the Asian American-Pacific Islander (AAPI) community: for example, the Library of Congress commemorative website recognizes that AAPI is a “rather broad term” that can include

all of the Asian continent and the Pacific islands of Melanesia (New Guinea, New Caledonia, Vanuatu, Fiji and the Solomon Islands), Micronesia (Marianas, Guam, Wake Island, Palau, Marshall Islands, Kiribati, Nauru and the Federated States of Micronesia) and Polynesia (New Zealand, Hawaiian Islands, Rotuma, Midway Islands, Samoa, American Samoa, Tonga, Tuvalu, Cook Islands, French Polynesia and Easter Island).

Understanding that diversity has huge policy and political implications, particularly in health policy. Continue reading

From bioethics to medical anthropology to humanities and back: A year in review

I thought I would take this opportunity to reflect on the past year, where I will be in the future, and how the student fellowship has impacted me. I still hope to contribute to the Bill of Health blog going forward, but as my last official post as a Petrie-Flom Student Fellow, I would be remiss if I did not express my sincere gratitude to everyone at the Petrie-Flom Center, the faculty and staff, the other student fellows, and especially my mentors: Professors I. Glenn Cohen, Carmel Shachar, and Intisar A. Rabb.

My own project took a few different turns this year. My original proposal was to explore the ways in which bioethics and biomedical issues will play a significant role in reviving the dialectic between secular scholars and religious authority. Ayman Shabana rightly argues that respect for Islamic religious norms is essential for the legitimacy of bioethical standards in the Muslim context, wherein he attributes the legitimating power of these norms—as well as their religious and spiritual underpinnings—to their moral, legal, and communal dimensions. Building off of Shabana’s work, my initial argument held that the relationship between the secular and religious worlds is important because the discourse between the two, although often presumed to be dichotomous, is not necessarily antithetical nor is it impassable. This led me back to the arguments of the venerable philosophers Alasdair MacIntyre and Charles Taylor whereby, in critiquing the concept of secularism itself along with its historical contexts, furthered my argument and helped me to clarify the significant role that religion plays vis-à-vis categorical issues such as fundamental beliefs and metaphysics. I still maintain this, and it is something I continue to work on, although I decided to take my project in another direction.

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Elder abuse is not substantiated

Philip C. Marshal is an elder justice advocate and founder of Beyond Brooke. The remarks below were prepared for Our Aging Brains: Decision-making, Fraud, and Undue Influence, part of the Project on Law and Applied Neuroscience at Harvard Law School; April 27, 2018. The complete version of Decision-making, fraud, and undue influence—illustrated through the lens of the Brooke Astor story was published April 28, 2018 in Medium.

The meaning of elder abuse remains misunderstood, even by professionals.

I know—from hard-learned experience—when I, and many others, worked to save my grandmother from abuse by my father.

In a December 2006 court decision, my grandmother’s guardianship judge authorized reimbursement of my legal fees for bringing a guardianship petition for my grandmother, stating, “Although this matter voluntarily settled before the hearing, I find the petitioner Philip Marshall was the prevailing party…”

But the judge also decided to award my father a portion of his legal fees, writing, “I make this ruling based on the conclusion of the court evaluator that the allegations in the petition regarding Mrs. Astor’s medical and dental care, and the other allegations of intentional elder abuse by the Marshalls, were not substantiated.” [italics added]

Decision—In the Matter of the Application of Philip Marshall for the appointment of a Guardian for the Person and Property for Brooke Astor, an Alleged Incapacitated Person. Judge John A. Stackhouse, Supreme Court of the State of New York. December 4, 2006 Continue reading

Facebook Should ‘First Do No Harm’ When Collecting Health Data

By Mason Marks

Following the Cambridge Analytica scandal, it was reported that Facebook planned to partner with medical organizations to obtain health records on thousands of users. The plans were put on hold when news of the scandal broke. But Facebook doesn’t need medical records to derive health data from its users. It can use artificial intelligence tools, such as machine learning, to infer sensitive medical information from its users’ behavior. I call this process mining for emergent medical data (EMD), and companies use it to sort consumers into health-related categories and serve them targeted advertisements. I will explain how mining for EMD is analogous to the process of medical diagnosis performed by physicians, and companies that engage in this activity may be practicing medicine without a license.

Last week, Facebook CEO Mark Zuckerberg testified before Congress about his company’s data collection practices. Many lawmakers that questioned him understood that Facebook collects consumer data and uses it to drive targeted ads. However, few Members of Congress seemed to understand that the value of data often lies not in the information itself, but in the inferences that can be drawn from it. There are numerous examples that illustrate how health information is inferred from the behavior of social media users: Last year Facebook announced its reliance on artificial intelligence to predict which users are at high risk for suicide; a leaked document revealed that Facebook identified teens feeling “anxious” and “hopeless;” and data scientists used Facebook messages and “likes” to predict whether users had substance use disorders. In 2016, researchers analyzed Instagram posts to predict whether users were depressed. In each of these examples, user data was analyzed to sort people into health-related categories.

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The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.” Continue reading

What can an 11th century Islamic philosopher teach us about 21st century neuroscience?

There is a lot of fascinating research about the brain coming out of Stanford University, with some exciting, cutting-edge work being done there. Early last month I reported on the findings made by neuroscientists at Stanford in understanding how mental rehearsal prepares our minds for real-world action. Today, I’ll outline the recent advances made by a team led by Sergiu Pasca, MD, assistant professor of psychiatry and behavioral sciences at Stanford University, and discuss some of the ethical implications of this research.

Pasca’s method enables him to culture cells in order to form brain organoids with robust structures that are not compromised by cells from other parts of the body, thereby allowing him to more accurately replicate distinct brain regions. Doing so provides greater structural organization and also allows him and his team of researchers to better study and understand pathological mechanisms and perhaps one day to examine the molecular, cellular, and circuit levels of a person’s neurons. This is a promising method and a big step toward greater understanding of psychiatric and neurological disease, leading Pasca to declare, “This is our doorway into personalized psychiatry.” At the same time—although these “brain balls” are not brains, nor do they receive sensory inputs from the outside world—it is clear that as scientists progress in both the techniques and complexity of replication, major ethical questions and dilemmas will arise.

Chief among these will undoubtedly be the perennial ethical debate about the ontology of a human being. Is it only physical, material, social—in which case we might think of ourselves as technicians—or is it spiritual, religious, metaphysical—in which case we would more likely consider ourselves custodians? When we speak about attributing rights to animals or consciousness to AI, it is because at bottom we hold some fundamental belief: about dignity, a soul, being, or about what life might mean in a relational or social and emotional sense. This is no different with Pasca’s brain balls; in fact, it is an even more pressing quandary. As Bruce Goldman notes in his article, “One of the most amazing things about their brain balls was that, with not much chemical guidance, they tended to take on a default structure that’s a facsimile of the most evolutionarily advanced part of the brain: the human cerebral cortex, with all six layers you find in a living human brain.” The ethics of growing human organs are one thing, but the ethics of growing brain balls, which might eventually lead to more and more complex synaptic connections followed by even more elaborate renditions of an actual brain, will become especially contentious given the meaning and significance that we associate with the brain—both biologically and existentially.

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Systemic Oversight: a new approach for precision medicine and digital health

By Alessandro Blasimme and Effy Vayena

Imagine a clinical research protocol to test the efficacy of a nutritional regime on the aging trajectory of the participants. Such a study would need to be highly powered and include thousands of people in order to observe a credible effect size. Participants would remain enrolled in the study for many years, maybe decades. Endpoints would include novel measures of healthy aging such as functioning (the capacity to perform certain activities) and the quality of social life. Participants would thus be asked to provide enormous amounts of personal data covering at the same time their health state, their habits and their social activities – most likely with the help of smart appliances, sensor-equipped wearables, mobile phones and electronic records.

In a different scenario a research team aims to develop clinical protocols for cancer treatment according to the unique genomic signature of their tumor. They will need patients, willing to undergo whole genome germline and tumor sequencing right at the moment of diagnosis and be included in a basket trial. Therapy would then be targeted to the specific genetic alterations of each individual in the hope that a combination of targeted drugs would generate better medical outcomes than the current standard of care.

These two scenarios correspond to the prototypical form of, respectively, precision medicine and precision oncology studies. The first is likely to require large (very large) longitudinal cohorts of extensively characterized individuals – like the All of Us Research Program. The second will require sustained sharing of genomic data, information on patients’ clinical history and response to treatment, and possibly a unique repository in which such information would flow to – something akin the NCI’s Genomic Data Common.

This kind of data-intense research, in particular, introduces game changing features: increased uncertainty about foreseeable data uses, expanded temporal span of research activities due to virtually unlimited data lifecycles, and finally, the relational nature of data. This last feature refers both to the fact that, for instance, zip codes contain other types of sensitive information like information about ethnic background (redundant encoding); and to the fact that data about one person contain information about others– as is the case, for instance, with genetic data among family members. Continue reading

Wishes at the end of life: comparing the right to try and right to die

By Oliver Kim

After an initial procedural hiccup, the House of Representatives passed a modified version of a federal “right to try” bill, legislation that would allow pharmaceutical companies to bypass the federally-prescribed clinical trial process to allow terminally ill patients to try experimental drugs. Similar legislation passed the Senate as part of a horse-trade in order to allow the swift passage of the FDA user fee reauthorization before that program expired. A majority of the states have passed right-to-try legislation, which is largely ineffective given federal preemption.

Much has been written about the ethical and legal questions surrounding the right to try as well as the political forces behind it. Proponents argue that the right to try is based on notions of mercy, compassion, and autonomy.

What has interested me about this debate is that often those same notions are used to justify the “right to die,” or aid in dying usually for terminally ill patients. I’ve written (and will be publishing a longer piece) and will be speaking about this question and if there are lessons that proponents of the right to die can learn from the political success of the right-to-try movement.

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Simulated Side Effects: FDA Uses Novel Computer Model to Guide Kratom Policy

By Mason Marks

FDA Commissioner Scott Gottlieb issued a statement on Tuesday about the controversial plant Mitragyna speciosa, which is also known as kratom. According to Gottlieb, kratom poses deadly health risks. His conclusion is partly based on a computer model that was announced in his recent statement. The use of simulations to inform drug policy is a new development with implications that extend beyond the regulation of kratom. We currently live in the Digital Age, a period in which most information is in digital form. However, the Digital Age is rapidly evolving into an Age of Algorithms in which computer software increasingly assumes the roles of human decision makers. The FDA’s use of computer simulations to evaluate drugs is a bold first step into this new era. This essay discusses the potential risks of basing federal drug policies on computer models that have not been thoroughly explained or validated (using the kratom debate as a case study).

Kratom grows naturally in Southeast Asian countries such as Thailand and Malaysia where it has been used for centuries as a stimulant and pain reliever. In recent years, the plant has gained popularity in the United States as an alternative to illicit and prescription narcotics. Kratom advocates claim it is harmless and useful for treating pain and easing symptoms of opioid withdrawal. However, the FDA contends it has no medical use and causes serious or fatal complications. As a result, the US Drug Enforcement Agency (DEA) may categorize kratom in Schedule I, its most heavily restricted category.

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Innovation Gaps on Life Science Frontiers

Join us in wonderful Copenhagen at our CeBIL Kick-Off Conference: ”Innovation Gaps on Life Science Frontiers? From Antimicrobial Resistance & the Bad Bugs to New Uses, AI & the Black Box”. The  Conference marks the start of the Novo Nordisk Foundation’s Collaborative Research Programme in Biomedical Innovation Law which is carried out within a unique network of international core partners, including internationally renowned experts at Harvard Law School’s Petrie Flom Center, Harvard Medical School/Brigham & Women’s Hospital, University of Cambridge, University of Michigan, and UCPH’s Department of Food and Resource Economics (IFRO).

Leading international experts, including i.a. our distinguished Bill of Health colleagues Glenn Cohen, Aaron Kesselheim; Nicholson Price, and Kevin Outterson, will discuss legal, economic, societal and scientific aspects of selected Life Science areas.

Time: Monday, 5 March 2018 09:00 – 18:00 (followed by a reception in the Gobelin Hall)

Venue: The Ceremonial Hall (Festsalen), University of Copenhagen, Main Building, Frue Plads 4, DK-1168 Copenhagen K

More information on  speakers, agenda and registration is available here and here.

Extended background:

Biomedical innovation is experiencing changes of epic proportions. Rapid progress in many scientific areas, such as gene editing, pharmacogenomics, artificial intelligence and big data-driven precision medicine, has greatly advanced the promises and opportunities of the health and life sciences. Nevertheless, the total number of truly new and innovative drugs receiving market approval is unsatisfactory. At the same time, some of the more innovative therapies that actually could reach patients have become extremely expensive or ethically problematic. These new technological possibilities raise many complex scientific, legal and ethical issues affecting many stakeholders, such as medical practitioners, regulators, patients and the industry.

To support the in depth study of these developments, the Novo Nordisk Foundation has awarded a grant of DKK 35 million for a new Collaborative Research Programme in Biomedical Innovation Law (CeBIL). CeBIL’s overall aim is to help translate ground-breaking biomedical research into affordable and accessible therapies by scrutinizing the most significant legal challenges to biomedical innovation and public health from a holistic cross-disciplinary perspective. CeBIL is hosted by a new Centre for Advanced Studies at the University of Copenhagen’s Faculty of Law. The research is carried out within a unique network of international core partners, including internationally renowned experts at Harvard Law School, Harvard Medical School, University of Cambridge, University of Michigan, and UCPH’s Department of Food and Resource Economics (IFRO). Moreover, CeBIL will collaborate with a broad network of stakeholder organizations and international experts within law, economics, life science, medicine, sociology and pharmacy.

This Kick-Off Conference marks the start of CeBIL which opened its’ doors on January 1st, 2018. Reflecting the research projects that will be at the focus CeBIL’s research during the first 5 years, leading international experts will discuss legal, economic, societal and scientific aspects of selected life science areas and debate future challenges and opportunities.

 

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The Opioid Crisis Requires Evidence-Based Solutions, Part II: How the President’s Commission on Combating Drug Addiction Ignored Promising Medical Treatments

By Mason Marks

Last year more than 64,000 Americans died of drug overdose, which is “now the leading cause of death” in people under 50. Opioids kill an estimated 91 Americans each day and are responsible for most drug-related deaths in the US. This public health crisis requires solutions that are supported by science and reason instead of emotion and political ideology. In Part I of this three-part series, I discuss how the President’s Commission on Combating Drug Addiction and the Opioid Crisis misinterpreted scientific studies and used data to support unfounded conclusions. In this second part of the series, I explore how the Opioid Commission ignored medical interventions that are used successfully in the U.S. and abroad. In Part III, I will discuss non-medical interventions such as drug checking and safe injection sites. The Commission’s failure to consider these options is likely driven by emotions such as fear and disgust rather than a careful review of scientific evidence.

Medical marijuana is currently accepted in 29 U.S. states and the District of Columbia. It is also permitted in at least 10 countries. However, the Opioid Commission outright rejected calls to consider the use of medical marijuana as an alternative to opioids for managing pain. Prior to the Commission’s first meeting, it solicited input from industry and members of the public on how to address the opioid crisis. In response, it received over 8,000 public comments. According to VICE News, which obtained the documents by submitting a Freedom of Information Act (FOIA) request, most comments were submitted by individuals urging the Commission to “consider medical marijuana as a solution to the opioid epidemic.” A spokesman for the Office of National Drug Control Policy, a body of the Executive Branch that provides administrative support to the Opioid Commission, reports receiving “more than 7,800 public comments relating to marijuana.” Despite these comments, in its final report, the Commission dismissed the notion that marijuana should play a role in treating chronic pain and opioid addiction. Its report cited a recent study from the American Journal of Psychiatry, which concluded that marijuana use was associated with an increased risk of opioid abuse. However, this study relied on data that was collected over twelve years ago. One of its authors, Columbia Medical School Professor Mark Olfson, told CNN that if the data were collected today, they could yield different results.

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The Opioid Crisis Requires Evidence-Based Solutions, Part I: How the President’s Commission on Combating Drug Addiction Misinterpreted Scientific Studies

By Mason Marks

The opioid crisis kills at least 91 Americans each day and has far-reaching social and economic consequences for us all. As lawmakers explore solutions to the problem, they should ensure that new regulations are based on scientific evidence and reason rather than emotion or political ideology. Though emotions should motivate the creation of policies and legislation, solutions to the opioid epidemic should be grounded in empirical observation rather than feelings of anger, fear, or disgust. Legislators must be unafraid to explore bold solutions to the crisis, and some measured risks should be taken. In this three-part series on evidence-backed solutions to the opioid crisis, I discuss proposals under consideration by the Trump Administration including recent recommendations of the President’s Commission on Combating Drug Addiction and the Opioid Crisis. Though the Commission made some justifiable proposals, it misinterpreted the conclusions of scientific studies and failed to consider evidence-based solutions used in other countries. This first part of the series focuses on the misinterpretation of scientific data.

Last year more than 64,000 Americans died of drug overdose, which is “now the leading cause of death” in people under 50. Opioids are responsible for most of these deaths. By comparison, the National Safety Council estimates about 40,000 Americans died in auto crashes last year, and the Centers for Disease Control reports that 38,000 people were killed by firearms. Unlike deaths due to cars and firearms, which have remained relatively stable over the past few years, opioid deaths have spiked abruptly. Between 2002 and 2015, U.S. opioid-related deaths nearly tripled (from about 12,000 deaths in 2002 to over 33,000 in 2015). Last year, synthetic opioids such as fentanyl contributed to over 20,000 deaths and accounted for the sharpest increase in opioid fatalities (See blue line in Fig. 1 below). Continue reading

Bioethics in Islam: Principles, Perspectives, Comparisons

An important questions in Islam, recurrent across time and space, is whether Islamic political theory recognizes rights claims against the state as distinct from rights claims against other members of the community. This continues to be an important subject today, intersecting the fields of law, religion, and moral philosophy. The classical tradition is divided on the matter, with the legal theory of the Shafi’i school of jurisprudence saying that rights are to be accorded viareligious authority, while the Hanafi school emphasized the universality of the notion of human inviolability (dhimma)—and the innate rights that derive from it—as God-given, universal, and applicable to all societies from the beginning of time.

Whereas in Western law there is generally a separation between law and ethics, in the Islamic tradition, there is more of a dialectical tension between the two: Where religious inwardness is more highly developed, attitude and intention are weighed more heavily, whereas in its absence however formalism and legalism are advanced as the ethical ideal.

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Medicine and Ethics: Religious or Secular?

By Yusuf Lenfest

There is no lack of controversy when talking about religion and medicine in America today. Medicine is studied, practiced, and firmly rooted in the corporal world while religion draws inspiration from texts, traditions, and the incorporeal. Yet from an historical perspective, religious pasts do shape the present, particularly in the realm of ethics and moral reasoning. Indeed, whatever one’s spiritual or philosophical predilections, religion continues to play a major role in the dialogue on medicine and health care in Western society.

Bioethics in particular has become a topic of growing interest in America, but there has been little critical discussion about its contextual underpinnings, which stem largely from a Western Christian perspective. This is not to say that another religion would arrive at radically different system of morals. While differences do exist amongst religious traditions, across both space and time, experience and common sense tell us that diverse religious traditions do in fact share in much of the same moral principles and foundations. So what might other religious traditions say about, or contribute to, the discourse on bioethics? Should religion even be included in the conversation, especially given that health care and healing belong to the sphere of medicine?

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Copenhagen Conference: Legal Perspectives on Synthetic Biology and Gene Editing

Join us at the Centre for Information and Innovation Law (CIIR) Faculty of Law, University of Copenhagen on 20 November, 2017 to discuss Legal Perspectives on Synthetic Biology and Gene Editing.

CALL FOR PAPERS

Emerging technologies in Synthetic Biology and Gene Editing offer incredible opportunities and promising solutions to some of the most urgent challenges faced by humanity, such as climate change, environmental protection, growing population, renewable energy and improved health care. But the emerging applications also raise exceptional ethical, legal and social questions.

This conference marks the final phase of the participation of the Copenhagen Biotech and Pharma Forum (CBPF) Research Group at the Centre for Information and Innovation Law (CIIR) in the cross-faculty research project BioSYNergy. In accordance with the goals of this large cross-faculty project on Synthetic Biology, the event explores legal perspectives on synthetic biology, systems biology and gene editing. Dealing with the legal responses to ethical and scientific challenges raised by emerging life science technology. Continue reading

Book Review: Phyllis Shacter’s “Choosing to Die” (A Story of Death by Voluntarily Stopping Eating and Drinking)

For some people, being mired in progressively degenerative dementia is an intolerably distasteful prospect.  Precipitous mental deterioration would, for them, indelibly soil the lifetime image to be left with survivors and would pose a repugnant physical and emotional burden upon caregivers.  They know that lingering in an utterly dysfunctional cognitive state can continue for many years.

One tactic to avoid prolonged dementia, after initial diagnosis, is to take steps to end one’s existence while still competent.  And one lawful method of self-arranged death is by voluntarily stopping eating and drinking (VSED).  Strict cessation of nutrition and hydration will typically precipitate death by dehydration within 10 to 14 days.  The patient will likely lapse into delirium or confusion after a number of days and remain semi-conscious or unconscious for the duration.

The VSED route is derided by some sources as a repulsive ordeal both for the patient and surrounding caregivers.  The detractors portray the process as both torturous and excessively undignified.  They envision death “by starvation” as entailing unavoidable suffering.  They perceive offensive indignity in the accompanying erosion of mental clarity (delirium) and in days of semi-conscious or unconscious lingering.  This liminal period is deemed demeaning to the patient and “a horrible vigil” for surrounding family watching the wasting patient die. Continue reading