12 October 2015
Research Fellow, School of Social Sciences, Cardiff UniversityAppeared in BioNews 823
Produced by Centre for Genetics and Society
Genomic medicine has advanced rapidly in recent years and, with our increasing capacity to collect and store genetic information, it holds not only great promise but also pitfalls, for individuals and communities. This was the topic under discussion in a live video conversation on 7 October, organised by the Center for Genetics and Society.
The conversation was between Professor Lisa Ikemoto of the University of California, who was interviewing Professor George Annas, Director of the Center of Health Law, Ethics and Human Rights at Boston University, about his book Genomic Messages: How the Evolving Science of Genetics Affects our Health, Families, and Future'.
Professor Annas and his co-writer Sherman Elias (an obstetrician-gynaecologist, who died last year) have written a book that addresses important issues. The blurb on the back refers to 'an uncertain time' and one that is 'fraught with understandable and uncomfortable questions'. So I was intrigued to discover what topics the conversation would cover, and what 'uncomfortable questions' it might address.
Professor Annas began the discussion by saying that there are too many mixed messages about genomics and misleading assertions about the central significance of genetic material above other factors. The discussion covered familiar territory for those interested in the social aspects of genetic technology – referring to routine and future technologies (for example, genetic testing and gene editing), particular uses (genetic screening and biobanking), initiatives (such as the US Precision Medicine Initiative) and processes of management and regulation (raising issues such as informed consent and privacy). Professor Annas said that the book tried to engage the public, which was sometimes a challenge, but that he felt the public has an important role to play in making decisions about the use and regulation of genetic information and its technologies. The one-hour conversation enabled Professor Annas to elaborate on his own views, including concerns about commercialisation, predictive testing for late-onset conditions, genetic testing of children, data protection and the meaning of informed consent.
One current initiative discussed at length was the Precision Medicine Initiative, which was recently endorsed by President Obama (see BioNews 789), although he prefers the term 'genomic medicine', as the label 'precision medicine' sounds too much like 'we're doing something just for you'. Professor Annas described the process of asking volunteers to provide samples and ensuring accurate representation of people from minority ethnic groups. On the question of informed consent, Professor Annas explained that it 'is not a form' but a process, and suggested that recorded conversations could help the patients to arrive at a decision. Professor Ikemoto asked whether we should all be 'privacy tigers', a term used in the book to suggest that we should all guard our privacy fiercely. Here Professor Annas reminded us that the protection of our data is currently dependent on the priorities of the companies that control that information, and that we should all agree on what we want in terms of data privacy and protection and then demand that.
The power of the consumer was a key theme, along with how market forces and unregulated access to technologies for a price pose a major challenge for professional associations. Professor Annas also reminded the audience of the history of eugenics and stated that genomics should never be used to 'create superior people'. 'What would eugenics look like today?' asked Professor Ikemoto Professor Annas replied that it would be different from the past– the government would not be involved and it would be more likely to be led by consumers.
The discussion then moved on to the illuminating example of newborn screening. Parents might well treat their child differently on the basis of a predictive genomic test, for example where a child is identified as being at risk of breast cancer or Alzheimer's disease in the future. Professor Annas said that parents rely on physicians to subscribe to high ethical standards in what services they provide, and he advised great caution – some types of knowledge could do more harm than good, and it is important not to test just because the technology is available or affordable.
I was particularly interested in the discussion around two recent technologies – gene editng and mitochondrial donation. There have been calls for a moratorium on gene editing techniques (see BioNews 795), and the UK has recently legislated for mitochondrial donation (see BioNews 792). In the latter case, Professor Annas argued that germline technologies pose a risk for the child and 'cross a line'. He recognised that although the UK had made the decision to legalise the technology, the USA had not yet had those discussions and broad debate was going to be essential.
Many of the issues discussed were ones that we have been talking about for 20 years. But this conversation helped to bring the debate up to date. I felt that Professor Ikemoto led the debate very well, but she didn't always challenge Professor Annas to go further.
At one point she asked about the science behind ancestry.com and Professor Annas appeared to blush, and laughed, saying 'I don't want to comment on that, I'll leave the science alone'. She went on to ask about genetics and race, which is discussed in the book. Professor Annas replied that 'there is no gene for race– race is a social construct' and Professor Ikemoto agreed and, sensing his discomfort, stopped there. Although it might be against interviewing etiquette, I felt that this discussion could have been extended rather than shut down. Indeed, I would have liked to have heard more about the writing of the book. Were there topics, technologies or questions that Professor Annas and his co-writer chose not to include in the book? Maybe there are still some 'uncomfortable questions' that we are not yet ready to discuss.
Buy Genomic Messages: How the Evolving Science of Genetics Affects Our Health, Families, and Future, by Professor George Annas and Dr Sherman Elias, from Amazon UK.