Ethical, legal and social impact of genomics in US healthcare

19 November 2013

A new academic centre in the US has been launched with a three-year research programme to examine the ethical, legal and social implications (ELSI) of genomics in health care. 
 
 
Centre co-director Dr Carol Somkin said: “In the future, there is the belief that everyone will have their genome sequenced and that information will be used to guide medical care”; research at the centre is intended to examine how such information will be used and the potential impact on society.
 
Joint co-director Prof Barbara Koenig noted that “figuring out how to translate genomic findings into prevention and clinical care has become a public health priority”. They hope that the association with private healthcare provider Kaiser Permanente will help influence clinical applications of genomics and the management of genomic information.
 
The centre plans to interact with ‘a broad range of stakeholders, including scholars, scientists, policymakers and clinicians from multiple fields and specialties’ to develop clinical guidance and health professional education related to ELSI genomics. Professor Wylie Burke has been named as Presidential Chair for the first academic year.
 
At the same time, the National Human Genome Research Institute (NHGRI), which provided some funding for the CT2G programme, has announced the appointment of the first director for their own new Division of Genomics and Society, Dr Lawrence Brody.
 
Comment: As the founding UK centre for public health genomics, which emphasises a multidisciplinary approach that encompasses ELSI as well as science, medicine and public health in the analysis and implementation of genomics in healthcare, the PHG Foundation welcomes news of the new academic centre in the US and shares many of their priorities. For example, the Realising Genomics project is already working with UK stakeholders to examine the ethical, legal and social challenges raised by genome sequencing in medicine, including issues of consent and privacy.

As a think-tank focused on policy development, the Foundation’s focus is arguably less conceptual, bringing together academics, clinicians and policymakers as an active and independent knowledge broker in order to realise effective changes in healthcare practice. However, it is heartening to see increasing recognition of the importance of ELSI and wider considerations in preparing for the growth in genomic medicine internationally; increased knowledge and understanding of such issues can only be a good thing, and multidisciplinary input is vital. 

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