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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… Read more
BIOETHICS FORUM ESSAY
Neither one of us expected to be talking about Hannah Arendt at the Vatican. We had been invited to give talks at the Pontifical Academy of Sciences on the scientific and ethical challenges posed by personalized medicine. Walking across the cobblestones of St. Peter’s Square we began to discuss how society regulates biomedical research. Are institutional review boards capable of dealing with innovations like personalized medicine? Are they too bound by regulations? Can they ask larger questions of meaning when simply following the rules won’t suffice? And most worrisome, has their bureaucratic function caused them to mistake regulatory compliance for ethical reflection?
Amazon.com made waves in health care when it announced that its Alexa Skills Kit, a suite of tools for building voice programs, would be HIPAA compliant. Using the Alexa Skills Kit, companies could build voice experiences for Amazon Echo devices that communicate personal health information with patients. Alexa’s various roles in health care stand to confuse (or potentially exploit) users.
Many survivors of sexual assault are not receiving the justice they deserve. For one thing, an estimated hundreds of thousands of rape kits are left unused, reducing the odds that the perpetrators will be identified and prosecuted. When rape kits are used, many survivors are flooded with bills, in some cases for many years. This system is unethical and illegal.
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.
Last week, the Department of Homeland Security announced the final public charge rule, which revises the interpretation of “public charge” in the Immigration and Nationality Act. Under the Final Rule, DHS may find applicants ineligible for a visa for admission to the U.S. or a green card granting legal permanent resident status if it determines… Read more
What would it take for the first case of gene editing of a human embryo, egg, or sperm to proceed in the U.S.? Many legal and ethical hurdles involving clinical trials, for starters.
Kathy Brandt, a leader in the hospice and palliative care movement in the United States, died on August 4. She was 53 and had been diagnosed with a rare, highly aggressive form of ovarian cancer in January. Brandt and her wife regularly posted on social media about their family’s end-of-life experiences.
Daniel Callahan’s final interview was with an undergraduate eager to learn about bioethics. “I could tell that bioethics was far more than a job to him,” she writes.
I will say it: Dan Callahan is the most important person in Bioethics. For his ideas; for his role in creating and nurturing The Hastings Center; and for his ability to spot, encourage, and motivate talent. Dan is credited as author or editor of 47 books and many hundreds of articles, chapters and the like.… Read more
There is a strange but charming tradition in the world of classical music of citing musical pedigrees. It’s not unlike the familiar parlor game Six Degrees of Kevin Bacon, but carried out with far greater seriousness. For instance, the renowned American pianist and conductor Leon Fleisher, still performing in his 90s, was a student of… Read more
Daniel Callahan, a national voice for responsible health and science, who pioneered the field of bioethics, died on July 16, three days before his 89th birthday. In 1969, Callahan cofounded The Hastings Center with Willard Gaylin. Callahan served as the Center’s director from 1969 to 1983, president from 1984 to 1996, and president emeritus, actively… Read more