Whilst I enjoyed this article I feel it should have tempered its upbeat message by an acknowledgement of the dangers of revealing and sharing personal genetic information.
Donation and analysis of genetic data has the potential to reveal a great deal of information about an individual and her family. Such information can do tangible harm, for instance deleterious genetic traits, that are sometimes revealed as an unintended consequence of sequencing, may influence employment opportunities or have a bearing on insurance premiums. Whilst the article states that so far no participants have had their data used against them, this is unlikely to remain the case. Of just as much concern is that this could also affect other family members, who may even have been unaware of the original donation.
Patients understanding of such dangers were dismissed relatively casually by stating that ‘participants should be able to make their own judgement about the risks involved’. Since nobody knows the future consequences of any genetic discovery, there can never be fully informed consent in this field. This is made even more challenging as this data cannot be fully protected from potential abuse. Even if data is pseudonymised, is already possible to identify specific people from their genetic make-up alone; once much more information gets into the public domain it will become increasingly easy to do so.
These concerns will be even more relevant when the General Data Protection Regulation replaces The Data Protection Act in two years’ time. Whilst it probably prefers that ‘explicit consent’ is given before genetic information is processed, Article 83 effectively means that any future control over what happens to their genetic information by the data subject is relinquished. Even the right to be forgotten is wholly illusory: once the data has been widely shared it simply cannot be withdrawn. Essentially scientific endeavor has been given ascendancy over personal privacy as far as genetic research concerned by this new legislation.
Advances like the sequencing revolution in medical science are to be applauded and will bring great benefits to society but there is no doubt that they would also cause harm to individuals. This should be of concern for both patients and the doctors faced with difficult ethical decisions surrounding confidentiality and disclosure.
Rapid Response:
Re: The 100 000 Genomes Project
Whilst I enjoyed this article I feel it should have tempered its upbeat message by an acknowledgement of the dangers of revealing and sharing personal genetic information.
Donation and analysis of genetic data has the potential to reveal a great deal of information about an individual and her family. Such information can do tangible harm, for instance deleterious genetic traits, that are sometimes revealed as an unintended consequence of sequencing, may influence employment opportunities or have a bearing on insurance premiums. Whilst the article states that so far no participants have had their data used against them, this is unlikely to remain the case. Of just as much concern is that this could also affect other family members, who may even have been unaware of the original donation.
Patients understanding of such dangers were dismissed relatively casually by stating that ‘participants should be able to make their own judgement about the risks involved’. Since nobody knows the future consequences of any genetic discovery, there can never be fully informed consent in this field. This is made even more challenging as this data cannot be fully protected from potential abuse. Even if data is pseudonymised, is already possible to identify specific people from their genetic make-up alone; once much more information gets into the public domain it will become increasingly easy to do so.
These concerns will be even more relevant when the General Data Protection Regulation replaces The Data Protection Act in two years’ time. Whilst it probably prefers that ‘explicit consent’ is given before genetic information is processed, Article 83 effectively means that any future control over what happens to their genetic information by the data subject is relinquished. Even the right to be forgotten is wholly illusory: once the data has been widely shared it simply cannot be withdrawn. Essentially scientific endeavor has been given ascendancy over personal privacy as far as genetic research concerned by this new legislation.
Advances like the sequencing revolution in medical science are to be applauded and will bring great benefits to society but there is no doubt that they would also cause harm to individuals. This should be of concern for both patients and the doctors faced with difficult ethical decisions surrounding confidentiality and disclosure.
Competing interests: No competing interests