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.
With few exceptions, most cultures put homo sapiens at the center or the apex of creation. Humans, it is generally believed, are distinguished from other animals by our self-awareness and our ability to use tools, to think, reason, and construct meaning and representations about life. The Abrahamic religious traditions are most notable in their anthropocentric vision of human purpose in creation; and although the metaphysics and teleology are sometimes challenged by advances in science and technology, the fact remains that human beings remain the paradigmatic case against which other animals or even artificial intelligence is measured. As a Muslim and a theist, I avow my belief in the unique status of humans; however, as someone who also believes in science and is keenly attuned to the environment, I have a great love for nature and the animal world, and a great desire to protect them.
It is with this, then, that I want to propose to put ethics before metaphysics in considering the moral status of what legal scholars and ethicists call “non-human persons.” In particular, I want to look at cetacean intelligence of orcas, dolphins, and whales to understand the way in which we might classify them as non-human persons which would be given certain rights and protections. Doing so, I argue, would enable us to collapse the bifurcations that influences much of Western thought thereby ushering in a more holistic, ecological and relational approach to ethics and being.
To begin with, I would like to make a distinction clear: I am not claiming that orcas, for example, are morally equivalent to humans, but I am suggesting that we ought to be more cautious with regard to understanding our place in the animal world as a whole, particularly as it relates to the precariousness of life itself. My argument below follows philosophical and ethical reasoning, though this might also be understood in the context of religious texts. The story of Yunus (aka Jonah) and the whale is found in both the Bible and the Qur’an. In short, Yunus felt discouraged that the people of Nineveh did not heed his call to worship God, and so he left in anger. Being cast into the sea, followed by being swallowed by the whale, was ostensibly punishment for his loss of hope and leaving the city without God’s permission; though on another level the exegetical scholars point to the fact of his supplication “O Lord! There is no god but you: Glory to you: I was indeed wrong” (Qur’an 21:87) as instructive of submitting to God’s will and the significance of humility. Indeed, the Qur’an goes on to say elsewhere: “Had he not been of those who exalt God, he would certainly have remained inside the whale until the Day of Resurrection.” (Qur’an 37:143-144). The whale, on this reading, is integral to the Abrahamic worldview insofar as it is the manifestation of God’s power and dominion over creation, as well as his lesson to human beings to remain humble. Read More
By Aobo Dong
According to Vardit Ravitsky’s paper on “Shifting Landscape of Prenatal Testing,” there exist two competing rationales for prenatal screenings for severe disabling conditions like Down syndrome. The “reproductive-autonomy” rationale justifies screening by invoking a woman’s individual autonomy. In contrast, the “public health rationale” justifies pre-natal screening and termination due to a Down syndrome diagnosis by invoking the costly public health expenditures that must be spent on children born with these disabilities – resembling a utilitarian calculation that minimizes pain and maximizes pleasure for society as a whole. According to Ravisky, the public health rationale creates social pressure that incentivizes women and their families to make the decision to terminate. Thus, the public health rationale is heavily pro-termination, while the individual autonomy rationale could lead women to make decisions in either way. What she proposes as a solution is to combat the public health rationale to allow women to make autonomous decisions free of social pressures, and establish a stronger “informed consent” procedure that better informs the implications of pre-natal screenings and Down syndrome so that women could make the best possible decision for themselves. This blog post will shed more light on this issue by invoking Martha Nussbaum’s capabilities approach to human rights.
A central feature of the capabilities approach is “adaptive preference” that measures the relative success in achieving the 10 core capabilities cross nation-states and social classes. Nussbaum is aware of the fact that “individuals vary greatly in their need for resources and in their ability to convert resources into valuable functioning.” Therefore, it is not even adequate to provide an equal amount of educational resources for one student with Down syndrome and another without any learning disability. Nussbaum would argue that the child needs something even more than a formal education, a proposal that could be much more costly than a regular education alone. She would not assume that a student with the condition must have a low self-worth; instead, she would consider the factors in the child’s social environment that may have caused such low self-esteem, and direct resources to improve the child’s own sense of worth and maximize her future potentials in living a fully human life. This is consistent with capability 7B (respect), which stresses their ability to “be treated as a dignified being whose worth is equal to that of others.” Read More
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.
Much of what we fear about artificial intelligence comes down to our underlying values and perception about life itself, as well as the place of the human in that life. The New Yorker cover last week was a telling example of the kind of dystopic societies we claim we wish to avoid.
I say “claim” not accidently, for in some respects the nascent stages of such a society do already exist; and perhaps they have existed for longer than we realize or care to admit. Regimes of power, what Michel Foucault called biopolitics, are embedded in our social institutions and in the mechanisms, technologies, and strategies by which human life is managed in the modern world. Accordingly, this arrangement could be positive, neutral, or nefarious—for it all depends on whether or not these institutions are used to subjugate (e.g. racism) or liberate (e.g. rights) the human being; whether they infringe upon the sovereignty of the individual or uphold the sovereignty of the state and the rule of law; in short, biopower is the impact of political power on all domains of human life. This is all the more pronounced today in the extent to which technological advances have enabled biopower to stretch beyond the political to almost all facets of daily life in the modern world. Read More
Think of the last few times you’ve had a very lifelike dream. Running, reading, or having conversations with others, are all activities that might happen during a particularly vivid dream. But would this be considered consciousness? Surely being in a state of sleep is not the same as being in a waking state; but if you are able to communicate, to attend a lecture, perhaps even to give a lecture whilst you sleep, what does this mean in terms of your brain’s activity? Very deep in the sleep cycle, a person may not respond immediately to touch or sound or any other sensory stimulus. That is, they may not wake up, though it cannot be ruled out that an external stimulus might influence the sub-conscious mind and hence their dream. We’ve all had the experience of hearing an alarm “in our dream” which is really our real alarm, yet our mind re-interprets it and incorporates it into our dream until we regain consciousness, i.e., wake up. What if you couldn’t wake up from your unconscious state? And if so, what would this mean for how your brain processes your thoughts? In effect, what would it mean for your lived reality if you could only live in your mind?
Beyond being a fun thought experiment, these may be some very relevant questions now that doctors have treated a vegetative-state patient with an experimental therapy leading him to regain partial consciousness.
It was reported yesterday in National Geographic, Popular Science, the Guardian, and elsewhere that a 35-year-old man who had been in a persistent vegetative state (PVS) for 15 years has shown signs of consciousness after receiving a pioneering therapy involving nerve stimulation. The French researchers reported their findings to the journal Current Biology. Led by Angela Sirigu, a cognitive neuroscientist and director of the Institut des Sciences Cognitives Marc Jeannerod in Lyon, France, a team of clinicians tried an experimental form of therapy called vagus nerve stimulation (VNS) which involves implanting a device into the chest designed to stimulate the vagus nerve. It works by giving off miniscule electrical shocks to the vagus nerve, a critical brain signal that interfaces with parasympathetic control of the heart, lungs, and digestive tract.
So again, what does it mean to be conscious?
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?
By John Tingle
The British media have been reporting and discussing widely the case of JS v M and F (Cryonic case), 10th November 2016 in the High Court of Justice, Family Division,  EWHC 2859 (Fam). The case is the first in the UK and probably the world to deal with the issue of cryonics and a 14-year-old girls dying wish for her body to be preserved after her death with the hope that at some time in the future she will be brought back to life after a cure for her illness is found.
Truth is stranger than fiction and this case raises some fundamental legal and ethical issues which will occupy future courts and the legislature for some time to come. I could not imagine a more novel and difficult medical law case.
JS had a rare form of cancer and her active treatment came to an end in August when she started to receive palliative care. Over recent months she has used the internet to investigate cryonics: the freezing of a dead body in the hope that there may be a cure for the illness that she had and will be brought back to life at some future time. Mr Justice Peter Jackson heard the case and stated in his judgement that the scientific theory underlying cryonics is speculative and controversial and that there is considerable debate about its ethical implications. Since the first cryonic preservation in the 1960s,the process has been performed on very few individuals, numbering in the low hundreds. There are two commercial organisations in the United States and one in Russia for this form of preservation.She is one of only 10 Britons and the only British child to have been frozen by Cryonics UK , a non-profit organization. Her body was transported to the USA and is being stored in a vat of liquid nitrogen by the Cyronics Institute in Michigan. Read More
The research assistant will work with the principal investigator Nir Eyal and collaborators from the Harvard TH Chan School of Public Health, Duke University, Massachusetts General Hospital, and the Brigham and Women’s Hospital as well as the ACTG HIV trial site network. The multidisciplinary team uses methods of clinical epidemiology, economics, simulation modeling, and normative theory to predict risks in early-phase HIV cure studies, assess how much likely candidates for participation understand those risks, and make ethical recommendations on the conduct of HIV cure studies.
The research assistant will help prepare, conduct and analyze a pilot survey expected to take place in a US site of the AIDS Clinical Trials Group (ACTG). The survey will assess perceptions of HIV cure and of cure study risks. The research assistant will also promote other research and grant-related activities, through literature reviews and assistance in the preparation of abstract, poster, and manuscripts for publication, grant applications, a simple project website (using Harvard’s user-friendly OpenScholar platform), and slides for lectures and seminars. The research assistant will be in touch with top researchers in HIV cure, medical decision making, and ethics from around the country, to facilitate our meetings, a workshop, and regular conversations to plan the research and debate ethical issues around early-phase HIV cure studies.
By Annette Rid
In “Ethical considerations of experimental interventions in the Ebola outbreak“, published yesterday by The Lancet, Zeke Emanuel and I discuss what we take to be the key ethical questions about the use of Zmapp and other investigational agents in the current Ebola epidemic. In essence, we argue that the national and international response to the epidemic should focus on containment and strengthening health systems, rather than experimental treatments and vaccines; that experimental interventions, if they are used, should be distributed fairly and only in the context of clinical trials; and that advance planning is needed for research in future Ebola and other epidemics, as well as for making any proven interventions against Ebola accessible in affected regions.
The full article is available open access. Be sure to check out the Lancet’s new Ebola Resource Centre as well, which includes many other interesting pieces and a podcast (access here podcast) covering—among other things—our paper.