CHAPTER 7

TEACHING ETHICS

As noted in chapter 6, almost any discussion of a topical SSI is likely to raise questions about what is the right decision and what ought we to do? For example, should any individual with a disabling genetic condition be able to have therapy using material from embryonic stem cells? Should prenatal genetic testing be readily available and selective abortion of a foetus with a severe genetic disorder be permitted? Parents can already choose the sex of their child; soon scientists may be able to isolate and remove the that increase the likelihood of schizophrenia, obesity, alcoholism, ADHD, and a host of fatal or disabling conditions. Should such , when possible, be permissible72? As Conway (2000) points out, the effect (if not the intent) of these actions should be considered eugenic because they put value on one kind of person at the expense of another. Indeed, they consciously seek to eliminate the less valued. The first (step) is to characterize disease as genetic, the second is to characterize as a disease every abnormality that is genetic. Plainly, if we follow that logic, the outcome will be, via the processes of privatized or ‘domestic’ eugenics, a population that is normalized according to whatever is perceived as ‘normal’ at the time the technology becomes available. (Appleyard, 1999, p. 139) It might soon become possible for prospective parents to choose the colour of a child’s hair and eyes or to select any other characteristics they regard as desirable. Here there is a clear eugenic intent. Should this be permissible? As Finkler (2000) and Finkler et al. (2003) point out, this new genetic technology is increasingly being used to transform a healthy person into a patient with symptoms and a designated condition or syndrome, thereby placing increasing emphasis on biological rather than social and environmental determinants of health and ill-health. This trend, which Lippman (1998) earlier referred to as geneticization, brings with it a wide range of ethical issues concerning privacy, discrimination, inequality and justice. Using diagnostic technologies to name and classify diseases not only provides a means for generalizing across populations, time, and locales but also provides a rationale for justifying giving or withholding treatments and labeling individuals and groups as being ill, aberrant, or ‘at risk’… When data are used to create categories based on probability and risk… new forms of subjectivity are created… When applied to other nonmedical institutional settings, such categories have far-reaching implications for governance and for individual lives. Susceptibility to substance abuse or chemical sensitivity, potential psychiatric disorders, probability of manifesting a genetic disorder,

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or even being in the state of carrying a gene can have serious consequences in terms of workplace discrimination or the courts. (Hogle, 2008, pp. 849 & 850) There are many other ethics-related questions that we might put to students. Should public drinking water supplies be fluoridated because it reduces the cost of dental care? Should certain rights relating to freedom and protection from harassment be extended to the great apes73? Should parents be required to ensure that their children receive the MMR vaccination regardless of any anxiety they may have about attendant risks, on the grounds that it is in the best interests of the wider community? More topically, should Gardasil, which has been shown to be 100% effective against human papillomavirus (HPV), the major cause of cervical cancer, be made available to all girls before they become sexually active, regardless of parental wishes74? Is ADHD an over-diagnosed condition and is the use of Ritalin merely a convenient way to render supposedly disruptive children submissive and compliant? What risks to health and privacy are likely to arise from current developments in nanotechnology and what ethical issues are raised by them? Recent developments in biotechnology raise many important questions and concerns about whether certain lines of research should be permitted. For example, the work of shifts the focus from reading a to writing one – that is, not just modifying an existing organism to ensure “more favoured characteristics”, but making an entirely new one. Venter’s Websites (www.jcvi.org and www.tigr.org) state that his research involves building new organisms from strands of DNA disarmingly called “biobricks”. In May 2010, he and his co- workers published an article in Science Express (www.sciencemag.org/cgi/content/ abstract/science.1190719) describing the stepwise creation of a bacterial and the successful transfer of it into a bacterium, where it replaced the native DNA. Driven by the synthetic , the microbial cell began replicating and making a new set of proteins (over 1 billion replication events, to date). We report the design, synthesis and assembly of the 1.08-Mbp mycoides JCVI-syn1.0 genome starting from digitized genome sequence information and its transplantation into a recipient cell to create new cells that are controlled only by the synthetic chromosome. The only DNA in the cells is the designed synthetic DNA sequence, including ‘watermark’ sequences and other designed gene deletions and polymorphisms, and mutations acquired during the building process. The new cells have expected phenotypic properties and are capable of continuous self-replication. (Gibson, et al., 2010, p. 1) The paper goes on to describe how the research team had sequenced the 600,000- base chromosome of a bacterium as long ago as 1995, and in 2008 had created an artificial chromosome that matched Mycoplasma genitalium’s but also contained “watermark DNA sequences” that would enable the researchers to distinguish the synthetic genome from the natural one. Transplanting the genome into a recipient cell in order to establish a cell controlled only by the synthetic genome (to be called, somewhat provocatively, Mycoplasma laboratorium) proved difficult because of the extremely slow growth rate of Mycoplasma genitalium.

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