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Event Review: The Age of Personalised Medicine - Genes, Privacy and Discrimination

8 August 2011
Appeared in BioNews 619

The Age of Personalised Medicine: Genes, Privacy and Discrimination

Organised by BioCentre and the Biochemical Society

Charles Darwin House, 12 Roger Street, WC1N 2JU, UK

Thursday 21 July 2011

'The Age of Personalised Medicine: Genes, Privacy and Discrimination', organised by BioCentre and the Biochemical Society, Thursday 21 July 2011

'The Age of Personalised Medicine: Genes, Privacy and Discrimination' was the last in BioCentre's 2010/2011 symposium series 'Revolution, Regulation and Responsibilities', and promised to 'appraise current developments and consider the current legal and regulatory position for their use before taking time to reflect and assess the future impact on society'.

The symposium certainly fulfilled its promise to analyse the current state of personalised medicine; by the end of the afternoon the six speakers, from range of disciplines, had covered numerous relevant issues. However the two Q&A sessions ended a little abruptly and I was disappointed that some panel members had no chance to summarise their opinions or comment on their peers' talks.

The first talk, given by Brenda Almond, Emeritus Professor of Moral and Social Philosophy at the University of Hull, took us on a whistle-stop tour of the ethical issues around genetic testing. Her arguments had clarity and balance, and she dealt with the complexities exceptionally well, especially given the time restraints.

She covered several topics with one of the most thought-provoking being the concept of 'informed consent'. How does this apply to newborn children (is there such a thing as 'consent by proxy'?) or family members who may be affected by their relative getting tested? And can patients ever be fully informed without a good grasp of the risks and statistics associated with genetic conditions?

Both she and another speaker, Helen Wallace, the director of GeneWatch, spoke of the increasingly easy access to genetic tests, particularly 'Direct To Consumer' (DTC) kits now widely available online. Professor Almond labelled this a 'mixed blessing' because of the difficulty in balancing harm and benefit: medicine aims to do good, but we should be wary of turning healthy people into 'perpetual patients' or creating a nation of the 'worried well'. Furthermore, what is the benefit of 'impotent knowledge'? For example, finding out you have a serious illness for which there is no treatment.

Getting life insurance was another often-mentioned concern. Will a heightened knowledge of our genetic predispositions and potential disorders mean we're refused insurance, or offered it at unaffordable premiums?

In her talk, Dr Ruth Stirton, from the Sheffield Institute of Biotechnological Law and Ethics, explained that insurers would want to use this information to ensure the cost of a claim would be covered. Professor Almond reminded us that insurance companies have a voluntary moratorium on asking for genetic information, but wondered how long it will last - '[is this] so powerful that it might undermine the way that insurance works?'

Dr Stirton ended by capturing the insurance dilemma succinctly in one sentence: 'Do we want to live in a society that values money more than what people need?' Changes in the insurance market will affect the lives of those we wish to protect, but the market can't correct itself. Other speakers included Alison Hall from the PHG Foundation, who explained their work and the projects they are currently involved in, and Dr Adele Langlois, from the School of Social Sciences, University of Lincoln. Dr Langlois thoroughly analysed UNESCO (United Nations Ethical, Scientific and Cultural Organisation)'s bioethics programme. She explained its role and gave a well thought-out critique of its flaws while offering suggestions for improvements along the way.

I found this insightful and informative because - like a fairly large proportion of the audience - I knew little of the programme or its inner workings.

A particular highlight of the afternoon was the talk given by Aaron Parkhurst, who is studying for his PhD at the Centre for Applied Global Citizenship, University College London. His description of a group of people from the United Arab Emirates with a skewed understanding of genetics highlighted what a difficult concept it is to explain, and how careful healthcare practitioners must be when advising people on inherited diseases and lifestyle management. In fact, this was such an interesting piece of anthropological research, BioNews commissioned Parkhurst to write a comment piece - look out for that, it's coming soon!

Overall, I enjoyed the symposium. The presentations didn't go over the same ground and the speakers put forward important questions. Unfortunately, I don't think that there was enough time left to analyse or discuss the future implications of these issues. The panellists and audience felt similarly; I could sense a lively debate in the offing, but sadly it was cut short before it really began.

14 December 2015 - by Andelka M. Phillips 
There is now a huge range of direct-to-consumer genetic tests on the market, but the public ought to be wary of what exactly they are agreeing to when they sign up for these services...
11 March 2013 - by Cristy Gelling 
In the decade since the human genome was first sequenced, the cost of reading a human genome has dropped from around US $100,000,000 to around US $6,000. In the past year the target has shifted from the '$1000 genome' to the '$0 genome'...
11 February 2013 - by Dr Barbara Prainsack and Dr Daniela Steinberger 
The Swiss Academy of Medical Sciences' position paper on the 'Potential and Limits of "Individualised Medicine"' illustrates a concerning instance of public fear mongering based on factual mistakes and misinformation...
15 October 2012 - by Dr Louisa Petchey 
Whole genome sequencing is getting faster and cheaper but the huge healthcare benefits this data promises must be balanced by policies that protect patient privacy, says a report by the President's Commission of Bioethics in the USA...
2 July 2012 - by George Frodsham 
People who undergo genetic testing to establish their future risk of developing a genetic condition, such as Alzheimer's or breast cancer, will continue to have the right to take out health insurance without disclosing the test results to their insurer....
30 April 2012 - by Amy Simpson and Marcus Longley 
No medicine is 100 percent safe. Medicines regulators need to decide whether the advantages of taking the medicine outweigh the disadvantages, and ask if the side effects are acceptable. Analysis of the risks and benefits associated with new medicines is very complex – what risks and benefits are we talking about, and how should they be weighed? Where the condition is serious and/or rare, these decisions can be even harder...
2 April 2012 - by Ruth Saunders 
Last week the Parliamentary Office of Science and Technology (POST) released a POST Note - a guide for MPs and other parliamentarians on science and technology issues - on consumer genetic testing...
27 February 2012 - by Maria Botcharova 
Is medicine magic? No, of course not. The active ingredients in the medicines we take are simply chemical compounds which interact with our bodies to produce a net effect. And yet, when we take a pill and our headache promptly disappears, it can all feel a bit miraculous to someone who doesn't know the chemical mechanisms...
31 October 2011 - by Dr Lux Fatimathas 
Increasing numbers of Israeli children with birth defects are suing medical professionals for failing to detect abnormalities and allowing them to be born, says the New Scientist. The magazine reports that such is the Israeli Government's concern over the rise in 'wrongful life' lawsuits it has launched an investigation into the validity of the claims....
19 September 2011 - by Ruth Saunders 
News reports that researchers have linked a certain gene to a disease, condition or trait appear almost daily. The most recent include multiple sclerosis, ovarian cancer, schizophrenia and even intelligence...
12 August 2011 - by Anna Wade 
What happens when a research team discovers something that has direct significance to the health of an individual involved in their study? Although the discovery of 'health-related findings' can occur in any study involving human participants, the answer to this question is by no means clear....
10 January 2011 - by Professor Anneke Lucassen and Dr Emy Lucassen 
Advances in genetic and genomic research mean that the identification of a genetic condition or a genetic susceptibility to disease is increasingly becoming a routine part of health care. Many more highly predictive genetic tests are available today than there were just a few years ago and for some conditions (for example, certain types of cancer or heart disease), there are proven surveillance or prevention strategies which can reduce morbidity or mortality...
22 November 2010 - by MacKenna Roberts 
The Equal Employment Opportunity Commission (EEOC), responsible for enforcing federal anti-discrimination laws in the US, has issued its 'final rule' guidelines clarifying how federal laws should operate to prevent job discrimination on the basis of genetic information....
18 October 2010 - by MacKenna Roberts 
The UK's Nuffield Council on Bioethics has reported that direct-to-consumer personal genetic profiling services used to predict people's genetic susceptibility for common diseases, such as Parkinson's and diabetes, are often inconclusive, misleading and can potentially cause unnecessary anxiety, complacency or distress when no treatment is available...
1 March 2010 - by MacKenna Roberts 
Canadians need better protection from genetic discrimination by insurers and employers, according to Winnipeg North MP Judy Wasylycia-Leis...
22 February 2010 - by Ben Jones 
An Australian insurance firm has become the subject of criticism after offering customers reduced price genetic tests while providing in the small print that the results are to be made available for consideration by life insurance providers should they desire them....
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