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• W2008323453 abstract "In early 1951, Henrietta Lacks, an African American woman living in Baltimore, consulted a doctor at the Johns Hopkins Medical Center. She had no idea that the vaginal bleeding that had led her there was the result of aggressive cervical cancer, which would ultimately prove fatal. Nor could she have guessed that the proliferating cells that were killing her would allow researchers at Johns Hopkins to develop the first immortal cell line later that same year. The HeLa cell line changed cell biology, leading to new opportunities for research as well as important medical advances. Despite researchers' efforts to protect the anonymity of the donor, Henrietta Lacks was soon identified as the source of the HeLa cells. Ethical questions quickly emerged, ranging from consent and confidentiality to uncertainty about who should share in the considerable profits generated by the cell line. Lacks's family, for example, saw no profits despite being asked to contribute blood for subsequent research about which they were not adequately informed. The case of Henrietta Lacks and the HeLa cells remains of interest more than a half century after her death because, although research protocols have changed since that time, the fundamental ethical issues about consent, exploitation, and profit raised by the case continue to trouble medical research involving cells, organs, and other body parts. These issues remain troubling because they rest on unresolved questions of what constitutes a human being: how we understand the relation of human beings to human body parts, on one hand, and to the collective body of humanity, on the other. Literature offers insight into these questions that can be helpful to the ethical, legal, and policy debates that have accompanied advances in scientific medicine. The field of medical humanities has long turned to realist fiction to help address such ethical questions. Yet few commentators have explored the perspective on those questions offered by the (often debased) genre of science fiction. The fantastic, futuristic, and often alien settings that are conventions of the genre lend themselves to broad speculation about the boundaries between what is and what is not human. Furthermore, the strangeness of these settings enfranchises speculation since it does not reproduce readers' preconceived ideas about present-day social issues with which they believe they identify. One of the boldest and most speculative science fiction writers of the late 20th century, Octavia Butler, has much to contribute to an understanding of the ethical dilemmas raised by the case of Henrietta Lacks and the HeLa cells. With her interest in science and race, Butler was almost certainly familiar with the famous donor. But whether or not she had Henrietta Lacks explicitly in mind when she created the protagonist of a series of science fiction novels written in the 1980s, the series, which would become known as the xenogenesis trilogy, addresses the ethical questions surrounding the famous case. In the opening scene of the first novel, Dawn (1987), an African American woman named Lilith awakens in a room in which she is being held captive. She notes only that she has a scar and wonders fearfully what has been done to her and why. Her first thought is that “she [does] not own herself any longer”. Lilith soon discovers that her captors, aliens known as the Oankali, have saved the last of the human race from the nuclear wars that have nearly destroyed the planet. Her scar is the result of surgery done to study a cancerous growth; they have not only cured her, but have also altered her genetic predisposition to cancer. The Oankali find cancer beautiful and believe the “talent” for growing it is the great gift that human beings have given to their species, since it teaches them about cellular reproduction. Lilith soon learns, however, that the Oankali are not only genetic engineers, but also “gene traders”. They promise health, longevity, and harmony in exchange for the future of the human species. For the Oankali, interbreeding is the key to the health of a species, and they welcome the new (hybrid) species of being that will result from their genetic exchange with human beings. For the human characters, that survival comes at the expense of their humanity. This clash of worldviews is Butler's central concern in the trilogy, and uncannily resembles the differing perspectives of the Lacks controversy and subsequent cases. Although the Oankali speak for the collective good, the human beings feel that their dignity is violated. The question of consent is especially controversial. The Oankali refrain from interacting with human beings without consent, but their definition of consent does not imply conscious acquiescence; rather, they read bodily impulses and ignore the conscious will. It is a matter of perspective whether the Oankali are coercing human beings or “reading” them when they perform genetic alterations that they believe will enable human survival and reproduction. For the human beings, nothing is worth the loss of conscious, reasoned choice, which they believe to be synonymous with freedom and dignity. The parallels with the Lacks case are striking, but the most important contribution that Butler's novels make to the ethical debates comes from their recasting of the issues in the strange context of an alien encounter. Discussions of the Lacks case often cast the experience of exploitation in racial terms, summoning the history of racism in medical research (for example, the infamous Tuskegee experiments) as the context of the violation of the dignity of the Lacks family. Butler's trilogy shifts the familiar terms of black/white when she invokes the legacy of racial slavery as central to the human beings' sense of their lost humanity. “Humanity” requires more than biological survival, and it implies more than free will, choice, and emotional range; it also relies on a recognisably human lineage stretching endlessly into the future. Without that horizon, human beings experience themselves as excluded from history and, accordingly, find life meaningless. Historian Orlando Patterson calls this experience of loss “social death”. He explains that racial slavery in the USA relied on that strategy to dehumanise enslaved people. In the xenogenesis trilogy, Butler shows how the social death that was a key feature of both enslavement and colonisation continues to inform the experience and definition of humanity. She, thereby, encourages an identification with Lilith's initial response that “she [does] not own herself any longer” and with the suspicion that the Lacks family and their supporters bring to their treatment by the researchers. Butler's challenge throughout her novels is to maintain the ethical consistency of both positions even while depicting their incompatibility. No position is harder to defend than the Oankali's sterilisation of human beings who refuse to mate with them. Yet, even that disturbing position represents a consistent Oankali ethics and stems from what they believe is their deep concern for human beings. Knowing that in the natural order of things they will eventually have to break up the planet they have saved, their unwillingness to sacrifice human lives leads them to prevent the continuation of a species that would not survive the Earth's dissolution. Butler does not ask her reader to accept the Oankali solution, only to understand that it represents a consistent ethical position. Butler's novels do not offer a clear resolution to the issues of consent, exploitation, or racism that surface in discussions of the HeLa cell line or other cases involving advances in medical research that emerge from the unusual properties of individuals' cells or body parts. They do not answer the question of what constitutes a human being or how responsibilities divide along the lines of individuals or collectives. They do, however, offer insight into the ethical consistency of incompatible perspectives. That understanding provides an important service if it allows individuals to consider a question from a point of view that differs from their own, and if it enfranchises their perspective from that of the group with which they identify. The clash between the Oankali and human points of view do not map neatly onto the issues raised by the case of Henrietta Lacks. It is, in fact, the very strangeness of the Oankali that makes it possible not to bring familiar biases to an understanding of their perspective. We can never fully free ourselves from our biases, but literature can encourage the reader to see the world through a strange lens. More than any other genre, science fiction is characterised by its effort to produce what the literary critic Darko Suvin calls “cognitive estrangement”: a challenge to our typically unquestioned assumptions. That challenge is the first step in understanding a viewpoint that differs from our own, a useful skill for those who debate medical ethics." @default.
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• W2008323453 title "Cognitive estrangement, science fiction, and medical ethics" @default.
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