In 2016, smartphones track our movements and habits and web searches reveal our thoughts. Self-driving cars, drones, and robots will soon record more of everything we do. With wearable devices and medical sensors connected to our smartphones, information about our physiology and health is entering the public domain.
The question is, where do we draw the line on what is legal and ethical in the collection and use of that data? Who owns it, who can access it and for what purpose?
Current laws dealing with how companies gain access to or use aggregated genomic data are incomplete. Organisations could use that information in the same way that lending companies and employers use social-media data, or how marketers can target ads at people with genetic defects.
Without regulation around the collection and sharing of genetic and health data in organisations there is always a risk of a ‘Gattaca like’ workplace eventuating where only the healthiest, fittest and most youthful pass the employment test.
‘Fit for work’ tests and health checks are commonplace in most companies, they are used to track organisational and individual employee information and fitness. If we can measure and use a person’s weight, height, or medical condition to make workplace decisions, what stops us taking that to the next step and using genetic data to do the same?
Genetic discrimination occurs when people are treated differently because of the genotype of a person rather than their individual merits.
In the US, genetic discrimination laws have been in place since 2008 and bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions.
In Australia we have yet to come to a consensus on how private medical data can be collected and shared and the law is lagging behind advances in technology. Laws typically take years to be enacted and technology changes rapidly, it does not wait for democracy or for the courts.
A case in point is that even as we struggle with the issue of genetic data, a new issue is rapidly developing in parallel. ‘Transhumanism’ is where individuals use technological advancement to enhance human intellectual, physical and psychological capabilities in order to gain an advantage. Characterised by the American political scientist Francis Fukuyama as among the world’s “most dangerous ideas,” its application may be closer than we think. If used to gain advantage in the workplace for hiring or promotional reasons, then social justice is at stake.
The debate has centred around enhancement options being made available as widely and as affordably as possible. But I would suggest there is a different and earlier argument, and that is, should genetic information, genetic disposition, or technological advancement of a person’s physiology really be a consideration in the workplace at all?
This may all sound surreal or space age, but if you consider that a decade ago a full human genome sequence cost $100 million and today it can be done for $1,000, we don’t have time to ponder this issue, patience is not a virtue in this case. We need to develop regulations and the human mind at the same rate to ensure we protect individuals and maintain a strong social conscience.
Achieving that takes greater ethical and moral education available than we are providing today, and to a broader audience.
Professor Petrina Coventry (FPCHR) is a speaker at AHRI’s National Convention 3-5 August 2016 in Brisbane. To check event details, see the sessions list and browse the exhibition presenters, click here.