Martin Richards

There is extensive discussion of the ethical, social, economic and political issues associated with the use of technologies based on DNA techniques. Many of these debates are premised on the assumption that DNA, and the genetic information that may be derived from it, have unique features which raise new social and ethical issues. In this paper it is argued that several of the features associated with DNA which are sometimes regarded as unique are shared with other biological materials. Others owe more to the cultural image of DNA and some of the metaphors used to discuss it in biology and in wider debates than to the biological properties of DNA. The paper discusses the concepts of genetic material and genetic information and the social construction of DNA in relation to forensic DNA databases, paternity testing and genetic testing for disease. The paper concludes by suggesting that there are seven areas where issues related to DNA and genetic information are at least relatively distinct.

Objectives: To study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder.Design: Semi-structured interviews and analysis/description of main themes.Participants: 78 members of 52 families who had been recruited to a molecular genetic study.Results: People were well informed about the goals, risks and benefits of the genetic research study but could not remember the consent process. They had mostly been recruited to take part by trusted clinicians or their relatives but had little memory of, or concern about signing consent forms. Families appeared to regard the research as a continuation of their, or their relatives’, clinical care.Conclusions: Ethical review should be more flexible in its attitude to consent forms and written information sheets for some sorts of research. For rare genetic disease studies where research has been discussed fully within the clinical setting then the consent obtained at that time could suffice rather than needing extra consent at a later stage. However, clinician-researchers will need to ensure that their duty of care extends for the duration of the research and beyond

Women who had had breast cancer and had been enrolled in a large genetic breast cancer epidemiological study were interviewed about their experience of participation in the study, their attitudes to the confidentiality of data, and the feedback of personal and general research results. Collection of family history information seemed more salient in indicating the genetic nature of the study than the enrolment information sheet. There were no concerns about confidentiality.While participants would have welcomed general feedback about the results of the study and were critical that this had not been provided, the feedback of personal information proved complicated and, sometimes, difficult. It is suggested that individual feedback of genetic test information in epidemiological studies should be undertaken only when there are specific reasons

The commercialization of ‘big science’ is in full swing, leading to situations in which the ethical principles of academia are beginning to be compromised. This is exemplified by the profitable business of genetic ancestry testing. The goals of this sort of ‘big science’ are not necessarily in any way novel, however. In particular, large genotyping projects have a certain start‐up time when their design is frozen in, so that the projects often lag behind the development of genetic knowledge. On the other hand, extremely provisional knowledge about potential disease markers is being rapidly turned into questionable ‘tests’, purporting to determine risk factors for complex disorders, by private companies that are eager to get their share of a profitable market of the future. The flow of money generated by such concerns looks likely to erode traditional research operations and small‐scale projects, which risk becoming pebbles on the ‘big science’ landscape. BioEssays 30:1246–1251, 2008. © 2008 Wiley Periodicals, Inc.

This paper traces the history of artificial insemination by selected donors as a strategy for positive eugenic improvement. While medical artificial insemination has a longer history, its use as a eugenic strategy was first mooted in late nineteenth-century France. It was then developed as ‘scientific motherhood’ for war widows and those without partners by Marion Louisa Piddington in Australia following the Great War. By the 1930s AID was being more widely used clinically in Britain as a medical solution to male infertility for married couples. In 1935 English postal clerk, Herbert Brewer, promoted AID as the socialization of the germ plasm in a eugenic scheme. The next year Hermann Muller, American Drosophila geneticist and eugenicist, presented his plan for human improvement by AID to Stalin. Some twenty years later, Muller, together with Robert Klark Graham, began planning a Foundation for Germinal Choice in California. This was finally opened in 1980 as the first practical experiment in eugenic AID, producing some 215 babies over the twenty years it functioned. While AID appeared to be a means of squaring a eugenic circle by separating paternity from love relationships, and so allowing eugenic improvement without inhibiting individual choice in marriage, it found very little favour with those who might use it, not least because of a couple’s desire to have their ‘own’ children has always seemed stronger than any eugenic aspirations. No state has ever contemplated using AID as a social policy