Tag: adoption

Bioethics Blogs

Beauty’s Knowledge: Hawthorne’s Moral Fable “Rappaccini’s Daughter” by Leo Coleman

Nathaniel Hawthorne’s story “Rappaccini’s Daughter” is a nineteenth-century moral fable that sets the fruits of experimental knowledge against obligations to humanity, and stages a dramatic encounter between these two apparent goods. In many ways, the moral it offers seems familiar, and could be recognized by anyone with even a passing familiarity with contemporary bioethical debates. It features a mad scientist’s garden, a gorgeous but poisonous plant of his creation, and a lovely daughter who tends to his terrible plants, and who is—like the plant—both attractive and potentially infectious. The daughter receives the attentions of a naïve medical student, and she falls in love with him, but their fate is shadowed by the actions of not one but two bad scientist father-figures who experiment upon the younger characters and try to shape their (biological) destinies without their knowledge. But Hawthorne’s story does not simply anticipate, in an antique and allegorical way, contemporary defenses of human dignity and nature’s inviolability. Nor does it merely rehearse, with its private garden and unknowingly experimented-upon subjects, a Lockean notion of our own inevitable and natural possession of our bodies and the fruits of our lives and labor.

Hawthorne’s story puts the experimental subject at the center of its moral allegory, suffering both hopes and fears provoked by her own mutability, her own biological plasticity. That is, his titular character is no innocent pawn in the hands of the great scientist: she is an artificial being—grafted and forced—and deeply morally and biologically transformed from the very beginning; but because of this she is also able to reflect on her relations with others and her environment, and to mark (in this case, tragically) a new ethical frontier.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

CAR-T cells: A drive to the future of cancer treatment

Conrad Fernandez describes the ethical challenges related to the use of CAR T-cell therapy for cancer patients.

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I am a pediatric oncologist and over the years have looked after hundreds of children with cancer – ranging in age from newborns into their early 20s. About a third of these children have suffered from leukemia. During my career of more than 25 years, I have seen my share of sadness and joy. Roughly one in five of these children have died – most often because of resistance intrinsic to their cancer but sometimes as a consequence of the toxicity of cancer therapy. These toxicities may occur acutely during the treatment (such as severe infections) or more insidiously appear years or decades later. A novel treatment approach that would overcome this resistance while avoiding chemotherapy toxicity would be most welcome.

A few years ago, I sat in a plenary session of the American Society of Hematology annual meeting (the preeminent hematology meeting in the world) where early phase CAR T-cell therapy was discussed. CAR (chimeric antigen receptor) T-cells are genetically reprogrammed immune cells that normally have the job of fighting infection or other foreign intruders into our bodies. CAR T-cells are manufactured to target a subtype of leukemia that is called B-cell leukemia – a type especially common in childhood. I thought to myself to take special note of what I was hearing, as this marked the potential for a paradigm shift in how we approached treatment of leukemia and perhaps other cancers. It is for these relapsed and refractory B-cell leukemia patients that the FDA’s Oncologic Drugs Advisory Committee (ODAC) has just recommended approval of CAR T-cell therapy – the first recommendation for approval of its kind.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

CAR-T cells: A drive to the future of cancer treatment

Conrad Fernandez describes the ethical challenges related to the use of CAR T-cell therapy for cancer patients.

__________________________________________

I am a pediatric oncologist and over the years have looked after hundreds of children with cancer – ranging in age from newborns into their early 20s. About a third of these children have suffered from leukemia. During my career of more than 25 years, I have seen my share of sadness and joy. Roughly one in five of these children have died – most often because of resistance intrinsic to their cancer but sometimes as a consequence of the toxicity of cancer therapy. These toxicities may occur acutely during the treatment (such as severe infections) or more insidiously appear years or decades later. A novel treatment approach that would overcome this resistance while avoiding chemotherapy toxicity would be most welcome.

A few years ago, I sat in a plenary session of the American Society of Hematology annual meeting (the preeminent hematology meeting in the world) where early phase CAR T-cell therapy was discussed. CAR (chimeric antigen receptor) T-cells are genetically reprogrammed immune cells that normally have the job of fighting infection or other foreign intruders into our bodies. CAR T-cells are manufactured to target a subtype of leukemia that is called B-cell leukemia – a type especially common in childhood. I thought to myself to take special note of what I was hearing, as this marked the potential for a paradigm shift in how we approached treatment of leukemia and perhaps other cancers. It is for these relapsed and refractory B-cell leukemia patients that the FDA’s Oncologic Drugs Advisory Committee (ODAC) has just recommended approval of CAR T-cell therapy – the first recommendation for approval of its kind.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Françoise Baylis and Carolyn McLeod (eds), Family-Making: Contemporary Ethical Challenges, Oxford University Press, 2014

This fascinating anthology focuses on the question of how we make families, and how bionormative assumptions shape or distort our collective thinking about parenting, children’s welfare, and state obligations to parents and children. The editors are primarily interested in the question of whether parents’ moral responsibilities toward children differ for children produced through assistive reproductive technologies (ART) compared to children brought into the family via adoption. As the editors point out, in the realm of ART, most of the philosophical literature has been focused on parental autonomy and rights to assistance in reproducing, while the adoption literature is almost entirely focused on the protection of children. The anthology does an excellent job of exploring this disconnect, and probing assumptions about moral responsibilities within family-making. Taken as a whole, the chapters explore “whether people should rely on others’ reproductive labour in having children, whether they should ensure that they will have a genetic tie to their children or that their children will have some connection to genetic relatives, whether they should bring a new child into the world at all, whether they should agree to what the government would require of them for an adoption, where they should live if the family they make is multi-racial, at what age they should forgo having children, and the list goes on” (6).

The first section of the book sets the stage with two excellent chapters on the goods of parenting (Harry Brighouse and Adam Swift) and the goods of childhood (Samantha Brennan). The goods of parenting are distinguished from other related goodsintimacy with another adult or friend, friendship with a child, being an uncle, having a pet, etc.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Orkideh Behrouzan’s Prozak Diaries: Psychiatry and Generational Memory in Iran by Dina Omar

Prozak Diaries: Psychiatry and Generational Memory in Iran

Orkideh Behrouzan

Stanford University Press, 2016, 328 pages

 

Orkideh Behrouzan’s first ethnographic endeavor, Prozak Diaries (2016), explores a question that has provoked much interest in the Middle East in recent years: what’s with all the talk about depression nowadays? The influence of Western clinical psychiatry seems to traverse language: the Farsi word afsordegi, for example, is often substituted by ‘depreshen.’ Prozak Dairies is a multifaceted exploration of the pervasiveness of depreshen talk, or the use of psychiatric language more generally, in Iranian society. The main thrust of Prozak Diaries considers the extent to which modern clinical psychiatric language has become vernacular—gradually normalized within Iranian popular culture and public discourse and co-constitutive with trends in psychiatric treatments and scholarly debates. Behrouzan identifies depreshen, as well as other psychopathologies such as attention deficit hyperactivity disorder (ADHD) and post traumatic stress disorder (PTSD), as diagnoses that have grown in popularity over the past three decades. She then follows the many elusive manifestations of psychiatric discourses and therapeutic practices amongst Iranians. Behrouzan asks questions that are not only relevant to Iranians but which also reflect global trends pertaining to increased rates of prescribing and consuming psycho-pharmaceuticals, an adoption of American clinical language, and an acceptance of an agenda standardized by American pharmaceutical companies. How, she asks, has the normalization of the psychiatric vernacular engendered new ways “of knowing, interpreting, and perceiving oneself in the world?” How might the contemporary psychiatric vernacular open up new ways of expressing mental or emotional conditions in Iran?

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Reproducing the Speculative: Reproductive Technology, Education, and Science Fiction by Kaitlyn Sherman

Walter, a Synthetic, quietly makes his rounds in the brightly lit, pristine interior of the Covenant, a Weyland Corporation Spaceship. Fingers pressed to the translucent, impermeable glass, he checks the status of each crew member as they rest in their cryochambers, suspended in chemically-induced comas until they reach their destined planet in seven years and four months’ time. The ship’s artificial intelligence system, Mother, chimes, “Seven bells and all is well.” Reassured of their security, Walter moves on to the next zone, where another 2,000 cryochambers contain sleeping colonists from Earth. This zone also features a panel of drawers, each housing dozens of embryos—over 1,100 second-generation colonists. They are packed individually into river-stone sized ovoids; clear, solid, egg-like. Amid the rows, an embryo has died, and its artificial uterine-sack is clouded and dark. Observing it briefly, Walter takes it from its socket with a set of tongs and places it into a biohazard bin. The Covenant is on a mission to colonize a habitable, distant planet. Their ship contains everything that could be useful in setting up a new colony: terraforming vehicles, construction materials, and human life itself. Even though these frozen embryos aren’t yet actively developing, they reflect a technology that allows for such a feat, while ensuring a population boom that is not dependent upon the limited space of mature female colonists’ wombs.

This scene is part of the opening sequence of the latest film in Ridley Scott’s Alien franchise. Alien: Covenant (2017) is the most recent science fiction film to illustrate advances in reproductive technologies, especially that of ectogenesis, or external gestation and birth.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Things Which Have Once Been Conjoined: Science Fiction, Contagion, and Magic in the Age of Social Media by Samuel Gerald Collins

There are many interesting formations that might be called networked phenomena. Homophily and the tendency towards triad closure. Scott Feld’s Rule (I’m more likely to make friends with someone who has more friends than me). Small world phenomena (those 6 degrees of separation). “The Strength of Weak Ties” (reportedly the most cited sociology paper in history). In all, a series of social forms that complicates typical binarisms like individual versus group.

All of these have their positive and negative sides, but few networked phenomena have been met with more ambivalence than that of contagion, the idea that things (memes, viral videos, fashion) spread from person to person in a way that is similar to an epidemic; that is, people believe certain things or participate in certain behaviors without necessarily having “decided” to do so. Instead, the chances of “contracting” an idea, a fashion, or a new technology come down to the structural position in a network—a question, for example, of k-threshold models, where the chance of contagion depends upon the topology of connections vis-à-vis other infected nodes.

Given its identification with epidemiological contagion, it is not surprising that social contagion brings with it a negative valence, conjuring up fears of loss of autonomy, of being reduced to “hosts” for the “viral” propagation of information in a network. Contagion is at the heart of the fear and fascination of the zombie. It is also part of the latest panic in politics, one that centers on a vision of an electorate easily manipulated through fake news propagated through social media.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Reflections on the Federal Budget & LGBT Families

Sophia Fantus argues that the expansion of a tax credit to LGBT individuals who use assisted reproduction helps to legitimize and include the perspectives, needs, and experiences of LGBT families.

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Assisted reproduction is associated with high out-of-pocket expenditures as services often cost tens of thousands of dollars. For the past ten years in Canada, heterosexual couples diagnosed with medical infertility have been able to claim the cost of assisted reproduction as part of their medical expense tax credit. Recently, the Canadian Government approved a new federal budget that allows LGBT (lesbian, gay, bisexual and transgender) and single persons to also receive a tax credit for assisted reproduction. That tax credit is retroactive for up to ten years.

The World Health Organization defines infertility as a disease in which there is a failure to achieve a pregnancy after at least 12 months of regular unprotected sexual intercourse. Accordingly, assisted reproduction has been conceptualized as a biomedical intervention to resolve a diagnosed medical condition. The new retroactive tax credit signifies the adoption of broader definitions of infertility that include LGBT experiences.

The Rainbow by Robert Delaunay, 1913

The use of assisted reproduction by LGBT families separates heterosexuality and heterosexual sex from procreation, and yields novel routes to parenthood for LGBT individuals. In contrast to the typical heterosexual experience, the use of assisted reproduction by LGBT individuals is often the primary (and desired) choice for pursuing parenthood. By including the experiences of LGBT families in the federal budget, the Government is indirectly supporting a broader understanding of infertility from a medical model to a social and structural model that recognizes  single women and men, as well as LGBT couples, who require a third-party to procreate.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Rethinking the Belmont Report?

Some bioethicists link the beginnings of our field to the Nazi Medical experiments and the Nuremberg Trial (Annas). Whether this is the beginning of bioethics is debatable, but without a doubt, research ethics has been a central topic in the field. In fact, the very first federal bioethics commission laid out the principles of research ethics in the Belmont Report. Later, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended to the President and Congress that a uniform framework and set of regulations should govern human subjects research.  This effort reached fruition under The Federal Policy for the Protection of Human Subjects or the “Common Rule” that was issued in 1991.  Since then, there have been no major changes to the regulations – until now.  After a five-year process and thousands of comments, the new “final rule” was released on January 19th, 2017.  The July 2017 issue of the American Journal of Bioethics addresses these changes.  In addition to our usual open peer commentaries, we are posting a number of blog posts written in response to the AJOB target article.


by Ibrahim Garba, MA, JD, LLM, Elizabeth Hall-Lipsy, JD, MPH, Leila Barraza JD, MPH

Norms supporting ethical research have been part of international human rights law from the start. The Doctors Trial in 1947 convicting 23 Nazi physicians and officials accused of euthanasia and unethical medical experiments produced the Nuremburg Code. The Code became a blueprint for subsequent human subject protection frameworks, most notably the World Medical Association’s Ethical Principles for Medical Research Involving Human Subjects (i.e.,

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – June 2017, part two by Aaron Seaman

The first part of the In the Journals post for June 2017 can be found here. And now, for part two…

 

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.