Fostering public engagement in the ethical and social implications of genetic technologies

EthicsAndGenetics: Our Perspective

Notions of ‘citizen participation’, ‘citizen science’, ‘responsible innovation’ and a ‘public ethics’ are commonly invoked in contemporary literature on good governance and policymaking in science and technology. The Nuffield Council on Bioethics (UK) report, “Emerging Biotechnologies: Technology, Choice and the Public Good” is a case in point, with its focus on the social, economic and political environment in which new technologies emerge and policy and regulatory decisions are taken. The centrality accorded to public consultation is a key feature of the report. The consensus in the literature is that public participation in science and technology – and specifically genetic engineering, as in the case of Nuffield’s report – is a valuable social good. We agree.   Fostering public involvement in decision-making in relation to bioscience policy has both ethical and pragmatic advantages. By including the public at the earliest stage, scientific innovation can be steered toward socially beneficial ends. Affording…
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Government seems more interested in our genes than our voices

This is a pivotal time for the future of human genetic technologies. New gene editing techniques such as CRISPR/Cas9 suggest that any limits to the uses of genetic engineering will not be due to the technology itself, but to political decisions. Given that the application of such technologies is a matter of choice, public debate about the acceptability of these practices has to rise to the occasion.   Last year, in an attempt to build consensus for the regulation of these techniques, pioneers in the field of genetic engineering called for a moratorium on human germ-line editing. The scientists argued that genetic interventions on eggs, sperm, or early embryos posed substantial risks to future generations. It was noted that even just accepting the therapeutic use of genetic engineering to fix ‘faulty’ genes could pave the way for non-therapeutic genetic enhancement and designer babies.   Unfortunately, ethical and social concerns have not…
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Privacy Concerns in the Development of Personalised Medicine and the 100,000 Genome Project

With the UK launch of 23andMe’s home DNA testing kit, the legalisation of mitochondrial DNA transfer, and the 100,000 Genome Project underway, optimism abounds about the science of genetics delivering on its early promise. But there is also cause for greater caution and oversight than some biotechnology enthusiasts would like to admit. These developments are taking place with insufficient regard for their social and ethical implications. We can, however, be sure that the policies and regulatory frameworks currently being enacted will shape future decisions. A balance needs to be struck between the pro-R&D agenda that is driving a permissive regulatory regime, and sensitivity towards concerns about genetic technologies - that public consultation, if properly conducted, can alert us to. It is in the public interest that there is wider discussion of the full implications of recent developments. The 100,000 Genome Project is a case in point. The collection and sequencing…
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23andMe: Screening a Personalised Medicine Company for Ethical Problems

With the information that our genomes hold we can make better decisions and be more proactive when it comes to our health. We can now personalise medicine. 23andMe, the Google-backed personal genetics company, are working towards exactly that. According to their co-founder, 23andMe promises nothing less than to “revolutionize health care”. They have certainly made an impression: since launching their Personal Genome Service in 2008 (initially costing £636, now £125), 23andMe has received Time magazine’s Invention of the Year award and amassed 650,000 genotypes from customers – the largest single collection of DNA in existence. But their revolution has not gone entirely as planned. With controversy following controversy, last November 23andMe were forced to stop selling their genetic testing products in the US. Consequently they have explored the possibility of marketing their products in more congenial legal settings, and to that end 23andMe last week launched its home DNA Collection Kit…
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Care.data, Genomics, and the Launch of 'Accredited Safe Havens'

The decision to roll-out Care.data and the proposal to launch 'Accredited safe Havens' across the UK, gives compelling reasons to support the EU's strengthening of the data protection regime.  Following the announcement that Care.data will be rolled-out across England, a further, even more significant development is the proposal to launch ‘accredited safe havens’ (Ash). As a defining moment in the governance of personal information, ‘accredited safe havens’ will render obsolete the need to seek approval from the Secretary of State for Health and, in the case of medical research, by a research ethics committee or the Health Research Authority. This will make personal identifiable information easily accessible without a person’s consent and for purposes ‘other than direct care’.  Circumventing the legal instruments that have been germane to information governance hitherto, such as the Human Rights Act (1998) and the Common Law Duty of Confidentiality, ‘Safe Havens’ make an already permissive…
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Ethics and epistasis

Genes interact with one another. If you think about it, that’s not really surprising – the complex range of processes that cells engage in, like respiration or cell division, are unlikely to be accomplished by single genes acting in isolation. So genes act in networks or pathways, each one contributing some particular component, frequently they contribute to multiple different networks or processes throughout the lifetime of an individual (e.g. development and immune system). Genes are also variable. This means that no two individuals are alike. As a consequence the outcome of a particular interacting pair of genes will sometimes differ between individuals. Geneticists call this kind of effect epistasis. It’s really the dark side of genetics, in the sense that it’s poorly studied and we know very little about how widespread it may be, but a recent study suggests it is important.   Epistasis can occur between individual genes, between sets of genes,…
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Care.data and exercising our right to democracy

We have until March to opt out of the care.data initiative. The "theoretical risk" that we might be reidentified from our personal data once it is made available to third parties is a compelling reason to opt out. However, this is not the only reason. Care.data is part of a major legislative programme that includes the Clinical Practice Research Datalink (CPRD) and the 100,000 genome project – through which whole-sequenced genomes will be put to commercial use. These major infrastructural developments have been accompanied by radical changes to privacy law that have resulted in a cultural shift in the governance of information. These sweeping changes in privacy law were introduced without consultation, and the risks they entail will be borne by those whose medical records may be accessed without their consent. How did we get to this point? Fourteen years ago, written evidence by SmithKline Beecham to the Select Committee on Health, House of Commons, advanced…
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Standing in the way of Google-backed, 23andMe, will only delay the revolution medicine needs

Genetic testing is a powerful tool. Two years ago, with the help of my colleagues, it was this tool that helped us identify a new disease. The disease, called Ogden Syndrome, caused the death of a four-month old child named Max. But the rules and regulations for genetic testing in the US, laid down in the CLIA (Clinical Laboratory Improvement Amendments), meant I could not share the results of the family’s genetic tests with them. Since that time, I have advocated performing all genetic testing involving humans such that results can be returned to research participants. This I believe should extend beyond research, and some private companies, like 23andMe, are helping to do just that. For as little as US$99, people around the world can send a sample of their saliva to 23andMe to get their DNA sequenced. Their Personal Genome Service (PGS) analyses parts of a person’s genome. This data is then compared with…
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'A Shift in Privacy law, and the Attendant Risks'

  EthicsAndGenetics has published ‘A Shift in Privacy Law, and the Attendant Risks'. Coverage of the report by the Guardian can be found here. In this report, we identify and explore the risks associated with the government’s plans to establish a national genetic database and commercialise the sequenced genetic information held therein. Furthermore, we assess changes to privacy law and practice - in particular, the recent information governance review, and demonstrate that the new privacy framework fails to adequately safeguard highly sensitive information. In addition, EthicsAndGenetics can reveal that, by default, NHS-users can now be contacted to take part in clinical trials with private companies, without having expressed an interest in taking part in research of any kind, let alone clinical trials. The report comprises a critical account of a major legislative programme to commercialise medical and genetic information collected from the population; it shows that in combination with considerable changes to privacy law and practice, these developments put…
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Privacy, the CRPD and the Commercialisation of Personal Medical and Genomic Information

Medicine and healthcare appear to be in the midst of previously unimaginable changes. These changes might result in an improvement in our understanding of the nature of disease and, in time, assist us in predicting how a patient might respond to treatment. However, the fact remains, sweeping changes have been made to the way medical information is shared and accessed, and the cornerstones of medical law are being eroded for a science still in its infancy. The coming together of genomics, genetics and society in entirely novel ways, brings with it risks that are difficult to quantify, and must be the object of open and sustained public discussion. Genetics, genomics and advanced biotechnology are not business as usual. The public must,  therefore, be given a central role in decision-making when it comes to substantive decisions in these areas. Indeed, a national genetic database and the commercialisation of genomic data was…
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