Should lay people worry about the security, privacy, and future uses of genetic material they submit to academic genomics studies or private companies like 23andMe?
This is an excellent question and I think societies should definitely get ready for the ‘genomic era’. There will be more and more genetic testing done in the future. I personally do not think our greatest worry is access to our genetic material or information. Not right now anyway. Just simple questions about family history and behavioural data that people provide on social media – give more information than genetic testing today. The first thing that “lay” people (I prefer the term, non-experts) need to worry about is how little we know and understand about genetics. This is because right now most people would not know how to interpret the probabilistic information they are getting from their ‘genes’. This may affect them psychologically. If you’d like to know more about efforts to formulate an international ethical frame work for genetics research I’d recommend this paper.
Professor Yulia Kovas, Behavioural Geneticist
Genetic data are sensitive data. A sequenced genome provides significant information about a person, and large samples of genomic data provide a great resource for research to improve health, education etc. These data are therefore very useful to private companies (pharmaceutical etc), University researchers and governments. Whether people should be concerned about their genetic data depends on the circumstances. As it stands, almost everyone’s genomic data would be with their GP/hospital, and these data are centralized. There are also projects in the UK and internationally analysing a combination of data – namely genomic, medical and personal. Therefore, the genomic data of almost everyone is already being processed and numerous data breaches from the NHS etc have been reported.
So then one needs to ask the question – how safe are my data from being used other than for research purposes? The answer to this will be different for each case. In relation to University researchers, there is not much incentive to mishandle genomic data. Generally, they are anonymised in a way that one cannot link them to an individual even through hacking into a system.
Re: private companies, it is an important consideration that their interests are primarily commercial. The questions one needs to ask include: if there was a breach by the commercial company, would I know; if I learned about it, is there a remedy and what do I need to do to obtain that remedy; and does the potential remedy outweigh the potential harm?
Fatos Selita, TAGC Director of Institute for Law, Ethics and Policy
What are the potential implications for the public if large companies attempt to patent genetic modifications for humans in the same respect that companies such as Monsanto have done for crops? If a company were able to develop a genetic modification to prevent a degenerative condition such as ALS and patent it, would an individual be infringing upon said patent by passing that genetic sequence on to their offspring through natural reproduction?
This is a real concern and I am very glad you are asking this question. We need to do all we can to sustain funding for genetic research and not to leave it to commercial companies only. Indeed, current law allows patenting in genetics and this may disadvantage us in the future. The Human Genome Project is a tremendous example of scientific collaboration – scientists all over the world worked together round the clock to sequence the human genome and to make it publicly available – rather than allow commercial companies to patent it. I hope that future genetic discoveries will benefit everyone equally.
Professor Yulia Kovas, Behavioral Geneticist
Patenting of genes is not allowed in the EU. In the USA, it was allowed until 2013 when the US Supreme Court decided that natural occurring phenomena cannot be patented. In relation to the second question, as per current laws, the answer is ‘no’.
Fatos Selita, TAGC Director of Institute for Law, Ethics and Policy
Do you think that gene sequencing is something everyone should have done in the future? Do you think the existence of this information would be exploited by insurance companies to inflate prices for higher risk customers? Or even by potential employers who would choose not to hire a candidate based on genetic traits?
Leading researchers in the field have proposed that that soon everyone’s DNA will be sequenced at birth. Whether everyone should sequence their genome will depend on the circumstances – mainly whether the benefits for a particular person will outweigh the disadvantages.
In relation to insurance, there are concerns from both sides – insurers and public. Insurance companies’ primary interests will be commercial. As such, they would not wish to insure someone with high risk, unless they charge high premiums. This means that if insurance companies get access to genomic data, they would wish to use it.
On this other hand, if people know important health information from the sequencing of their genome, then those with low risk will not insure, or will ask for a better deal. This will lead to insurance system not functioning, because generally payments of the healthy cover the costs of the unfortunate.
Insurance companies however, before insuring someone have always asked for genetic information (i.e. family history and risks), but the genome would provide much more detailed information.
Selection on genetic basis has always been present. For instance, people have often been employed based on the school they went to, parents etc., both of which are influenced by genetics. However, the genome will provide more detailed information and so it may allow employers to narrow the pool through the genome. It may also allow for the recruitment and investment of future employees from childhood.
As for whether the pros outweigh the cons – based on what we know to-date, the pros definitely outweigh the cons. If we are able to hire on genomic information, we should also be able to use that information to improve skills and abilities through gene-environment co-action – in other words, improving a trait through exposing it to the most suitable environment.
Using Genetics and Family Trees, we should, ultimately, be able to trace any human and figure out who they are. This just happened recently with Benjamin Kyle. How will the complete inability to live and die anonymously impact us?
The genome is unique for everyone. However, people have been identified though fingerprints, DNA etc. for quite some time now, and so the genome will not make any difference in this aspect. Moreover, in organised and developed societies, ‘living and dying anonymously’ has not been possible for decades.