Kris Vette is the founder of GeneCrypt, a genomic data encryption business.
OPINION: The mapping of the full human genome in the early 2000s is one of humanity’s greatest scientific achievements, revolutionising medical care through early prevention and the targeted treatment of disease.
Incredibly, by 2025, 60 million people in the United States alone will have had their DNA sequenced and analysed for healthcare purposes.
But clinicians and researchers, including in a recent article in the New Zealand Medical Journal, have raised concerns about the potential for the misuse, theft, or discriminatory use of DNA data obtained from genomic testing, including potential discrimination by health and life insurance companies.
It’s not a new concern, and my role in founding a genomic data encryption start-up, GeneCrypt (run out of Unitec’s Cybersecurity Lab) was a response to the need.
GeneCrypt’s approach is to offer individuals the technology to encrypt and control access to their genetic data.
Before our DNA was fully mapped, diagnosis of disease and inherited syndromes was often imprecise. Today we can identify many of the driver genes and gene combinations linked to the development of disease through genomic testing.
Early intervention and surveillance now give us the possibility of either preventing or delaying disease onset by decades.
Genomic data is fascinating in that it is very different to all other health data – it is persistent. Unlike cholesterol level, blood pressure or body fat percentage, it almost never changes.
This means it can provide long-lasting, predictive information, not only about us but also about our relatives.
Already, many lives have been saved by identifying risks early, even before a disease has developed. Examples include the gene combinations responsible for cardiovascular disease, sickle cell anaemia or the BRCA1/2 gene variants that place carriers at a higher risk of developing breast, ovarian, pancreatic or prostate cancer.
However, with this new access to our DNA, or genomic data, comes risk. Interested parties outside the clinical setting can use this data, which is unique for every individual.
Insurers, employers, advertisers and identity thieves are amongst those who seek our genomic information.
Unfortunately, New Zealand is not among the countries which have implemented legislation to safeguard people from genomic discrimination in insurance following the ratification of the Universal Declaration on the Human Genome and Human Rights. This states that “no one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity”.
In 2019, Australia’s Financial Services Council introduced a five-year self-regulated moratorium on the use of genetic test results by insurers, but the same did not happen in New Zealand, meaning companies here can request access to a person’s genetic test results for insurance purposes.
As New Zealand insurance companies are legally allowed to ask for and use applicants’ genetic test results in underwriting decisions, this can lead to “genomic discrimination”, say the NZMJ article’s authors, whereby insurers can increase premiums or deny cover to people on the basis of these results.
This in turn can lead to people declining medical genetic testing or not taking part in genomic research studies for fear of being discriminated against if the results identify the potential for later disease development.
As we advance into a digital frontier where disease risk may be identified and managed or eliminated at the earliest possible stage – often even before a person is symptomatic – there is an urgent need for security technology to protect this more intimate information about each of us.
This area of data security is something everyone should care about, even more than they do about the security of their bank account, because in the new world of digital health, genomics, gene editing and personalised medicine can be accessed from anywhere around the globe at any time.
If our genetic data is held on our health provider’s or insurance company’s computers, it is vulnerable to the hundreds of data hacks that occur each year.
As more and more parties, from insurers and employers to healthcare providers, seek those insights, the right tech in the right setting can return control over that data and its interrogation and use to the individual.
The authors of the NZMJ article argue that fear of discrimination can have serious medical impacts, hamper genomic research studies, and even financially punish people who are simply trying to take care of their health.
As the cost of sequencing a human genome comes down and the use of those insights for precision healthcare goes up, the problem will only worsen, and the authors have formed an alliance to address the issue of genomic discrimination.
Everything evolves at warp speed in the digital age, and it is not hard to imagine a time when a billion people will have had their DNA sequenced for their own personalised health programmes.
It is vital that individuals have the means to control who has access to that information without risk of loss to us.
Kris Vette, the founder of GeneCrypt, which he started after recognising the need for people to control access to their genetic data.