Bioethics: Basic Questions and Extraordinary Developments

Vicini, Andrea, Theological Studies

THE 2011 ANNUAL MEETING OF the American Society for Bioethics and Humanities (ASBH) counted over 850 participants. The meeting's theme--Generation(s) and Transformation(s)--suggested that the original heritage of bioethics, rooted in part in religious claims, was at stake. Clinical interests and philosophical approaches preeminently dominated the meeting. (1)

To highlight the importance of this heritage, Commonweal published interviews with key figures in bioethics. (2) With their narratives, new generations of bioethicists, both theological and philosophical, can situate themselves within the history of bioethics, retrieve some intuitions, and expand them in light of new challenges.

Looking for theological bioethics specifically, we find it treated prominently in the second cross-cultural conference organized by Catholic Theological Ethics in the World Church (CTEWC) in Trento in 2010. (3) One-third of the posters and almost one-fourth of all 240 concurrent sessions discussed issues in bioethics, plus one plenary session reflected on healthcare in Brazil, India, and Kenya.

Almost 600 theological ethicists from nearly 75 countries listened to colleagues from every continent discuss how to articulate bioethics in today's world. Among the topics were healthcare, HIV/AIDS, end-oflife issues, and cybertechnologies. Fundamental categories in bioethical Catholic discourse were also highlighted (e.g., justice, the common good, the preferential option for the poor, subsidiarity, human dignity, responsibility, relationality, and autonomy). Vulnerability was also used as both an analytical tool and a lens through which to read our lives and interpret our times. (4)

These two major conferences exemplify the two souls of bioethics. They characterized its beginnings and still do today. One soul is mostly national and focuses on issues related to clinical practice and research procedures; it is predominantly philosophical and principle-based. The well-known four principles of bioethics (beneficence, nonmaleficence, autonomy, and justice) play a very significant role. (5) The second soul is specifically theological, at once local yet attentive to the global. It is rooted in religious traditions, particularly Christianity, but also Judaism and Islam. It relies on social justice and virtues, with "strong links between life and ethics and social ethics," as Pope Benedict XVI wrote. (6)

These two souls dialogue and interact in various ways and venues, from the academy to civil society. They shape moral reasoning and influence practices. While the contributions of both souls are constructive, they might become independently self-sufficient. In 2010, two journals, Bioethics and Christian Bioethics, discussed the future of bioethics. There, some authors were skeptical and critical about the future of the discipline, often limiting their reflection to concerns too narrowly philosophical (7) or too confessionally theological. (8)

As will become clear, I prefer the second soul, that is, a bioethical reflection that is methodologically interdisciplinary, animated by a prophetic vision, and promoting personal and social transformation. It strengthens my hope for the future of bioethics. (9)

My note joins these conversations, maybe leading readers to identify their bioethical soul. I divide the note into three parts: recent provocative appeals, what is new in bioethics around the world, and three biotechnological developments: neurosciences, oncofertility, and synthetic biology.

PROVOCATIVE APPEALS

Provocative insights that challenge bioethical reflection today mostly occur not in the field of bioethics but rather in history, journalism, surgery, literature, and even in personal experience. I find five provocative insights, raised mostly by women. They concern human experimentation, medical research for therapeutic purposes, healthcare practices, genetic testing, and care for persons who suffer severe disorders of consciousness. They raise basic questions. They do it anew, with the captivating force of their narratives well disposed to the claims of interdisciplinarity.

Revealing the Truth: The Guatemala Scandal, by Susan Reverby

On May 2, 2010, at the annual meeting of the American Association for the History of Medicine (AAHM), historian Susan Reverby presented a disturbing paper on the experimental study conducted in Guatemala by physicians of the U.S. Public Health Service (PHS) between 1946 and 1948. (10) She reported how underprivileged vulnerable groups (e.g., prostitutes, prisoners, psychiatric patients) (11) were infected with syphilis, gonorrhea, and chancroid, and then medically treated. (12) To infect them, the doctors relied on infectious prostitutes or directly exposed the subjects to infected tissue. (13) To her surprise, the academic audience expressed little reaction to her revelations. (14)

Fortunately, she contacted a colleague at the Center for Disease Control (CDC), who reacted promptly. (15) On October 1, 2010, Secretary of State Hillary Rodham Clinton and Secretary of the Department of Health and Human Services (DHHS) Kathleen Sebelius issued formal apologies to the people of Guatemala. (16) President Obama personally expressed to President Alvaro Colom of Guatemala his deep regret and extended an apology to all those affected and to the whole Guatemalan people. (17)

Reverby already raised our awareness about another instance of unethical research: the Tuskegee syphilis study, conducted between 1932 and 1972, (18) in which the U.S. PHS studied more than 600 African American men from Alabama with syphilis; they thought they were being treated. Despite common belief, they were not infected by the researchers. But after 1947, when penicillin was found to be an effective cure, these men were left untreated until the end of the study in 1972.

In Guatemala, the research aimed at studying syphilis and its prophylaxis. The researchers on the ground and their liaisons in the United States knew well that "they were treading on complicated ethical grounds." (19) The Guatemalan research, federally funded, could not have been conducted in the United States In 1947, while this study was going on, in Germany, at Nuremberg, 23 Nazi doctors were under trial for their crimes. (20)

Thus, President Obama demanded a first report on the Guatemalan study (21) and a second on the effectiveness of U.S. rules and international standards to protect human beings involved in research studies. (22) But something equally disturbing happened just a few years ago. As recently as 1997, Marcia Angell, editor of the New England Journal of Medicine, condemned 15 of the 18 trials conducted in Third World countries involving more than 17,000 pregnant women. (23) The studies aimed at assessing how to prevent the vertical transmission (i.e., from mothers to their newborns) of the HIV infection with the antiretroviral zidovudine. Administered intravenously during labor and then to the newborns, the drug reduces the incidence of HIV infection by two-thirds, saving "the life of one of every seven infants born to HIV-infected women." (24)

The studies, however, included placebos. Thus, the standard care internationally required was denied to scores of pregnant women. The researchers justified themselves by saying that these women were poor, with no access to antiretroviral treatment, and that they were "simply observing what would happen to the subjects' infants if there were no study." (25) Angell invoked Tuskegee in her critique. (26)

Angell's revelations got little coverage in the media; apart from the research directors and a few ethicists, few people knew of them. As at the AAHM meeting, they generated neither outrage nor alarm. Tuskegee, Nuremberg, Guatemala, the zidovudine trials--the abuse of human research subjects, particularly poor and vulnerable ones, has a long history. Reverby and Angell tried to provoke reaction: are we vigilant about our experimentation with human subjects?

Knowing Our Sources: Henrietta Lacks, by Rebecca Skloot

As every biologist in the world knows, HeLa cells are special. They are used in most studies …

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Publication information: Article title: Bioethics: Basic Questions and Extraordinary Developments. Contributors: Vicini, Andrea - Author. Journal title: Theological Studies. Volume: 73. Issue: 1 Publication date: March 2012. Page number: 169+. © 2009 Theological Studies, Inc. COPYRIGHT 2012 Gale Group.

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