New Zealand could be positioning itself to be the first government to get access to genetic data held by consumer DNA testing sites, and that’s a dangerous road to go down, writes Richard MacManus.
The NZ Law Commission has just released a DNA issues paper, to determine whether our DNA profiling laws need updating. The paper, and accompanying website, is focused on the use of DNA in criminal investigations. But it also raises intriguing questions about consumer safety for Kiwis who use – or have used in the past – personal genomics companies like 23andMe and Ancestry.com.
The first issue of great interest to all New Zealanders is whether your genetics results are safe from the prying hands of the Government.
As Commissioner Donna Buckingham pointed out in her introductory video for the issues paper, under the Criminal Investigations (Bodily Samples) Act 1995 “DNA samples can be obtained by compulsion or by consent”.
Does that mean New Zealand law enforcement officers could compel 23andMe or Ancestry.com to hand over your DNA data?
Technically, yes. They could do that via a court order, search warrant or subpoena. However, a footnote in the Law Commission’s issues paper states, “our research indicates that no successful requests have been made”.
Partly that’s because the consumer genomics companies have heavily resisted law enforcement requests so far, citing the privacy of their users.
In its latest Transparency Report, 23andMe noted that “we use all practical legal and administrative resources to resist such requests.” As for Ancestry.com, its latest report states the company “received no requests for information related to genetic information of any Ancestry member, and we did not disclose any such information to law enforcement.”
But how long can 23andMe and Ancestry.com hold out? Especially when countries like ours are reviewing how we wish to enforce “compulsion” for DNA requests.
The increasing power of DNA profiling
It’s an important question due to the ever-increasing power of DNA profiling. Genomics, the science of DNA, has advanced in leaps and bounds over the past couple of decades. Which is precisely why the Law Commission is undertaking this review.
The current New Zealand legislation, as Commissioner Buckingham said in her video, still relies “on the science of 1995”. Back then, DNA profiling was akin to fingerprinting. But in 2019, DNA profiling is capable of so much more.
“DNA profiling can not only identify who we are,” she continued, “it can now also tell quite a lot about us. It can predict what we might look like, what our ethnicity might be, who our relatives are, and even what health conditions we might have.”
The executive summary of the 367-page issues paper sums it up this way: “the current trend is towards including more and more information in DNA profiles”.
All this means that your privacy and even your human rights might easily be compromised if authorities get hold of your DNA – or even the DNA of a distant relative – for a criminal investigation.
In the New Zealand context, the growing power of DNA profiling is particularly threatening to Māori. The issues paper points out that Māori “are currently over-represented in the criminal justice system and are more likely to be adversely affected by use of discretionary powers, forensic DNA phenotyping, familial searching, research on the databanks and retention of biological samples and DNA profiles.”
Interestingly, one of the solutions mooted by the Law Commission is that everyone in New Zealand could be compelled to do a DNA test. This would mean the DNA data of all NZ citizens is stored on the databanks of our law enforcement agencies.
I can’t imagine many people will want to give their DNA profile to the Government, because there are valid fears that this data could be misused. For example, what if health insurance companies were later given access to this databank? You never know what a future government might allow.
Health and life insurance concerns
The insurance issue is already a real concern for New Zealanders. Unlike countries like the US, UK and Australia, New Zealand does not have legal protections in place to prevent insurance companies from using your DNA results against you.
In a 2017 Newsroom report, our science editor Eloise Gibson wrote:
“All insurers canvassed by Newsroom require people applying for new health and life policies to supply the results of genetic tests they’ve taken, except when applying for some quick-turnaround policies over the internet.”
Gibson reported that while approaches vary, two of our biggest health insurance companies – Southern Cross and Sovereign – require you to disclose your 23andMe or other direct-to-consumer DNA results.
The danger is that insurers may use those results to set exclusions or raise premiums.
The situation in Australia is better, but our neighbours do still have an issue with life insurance.
“Private health insurance can’t be influenced by genetic test results,” wrote two teachers from Melbourne’s Monash University, “but life insurance companies can use genetic test results to discriminate against applicants, with little consumer protection.”
Ironically, given the poor state of its public health system, the US has done the most so far to protect its citizens from DNA tests. There are federal and state laws that prevent health insurers and life insurers from using your genetic information against you.
Beware of giving away too much
While the Law Commission’s DNA issues paper is focused on DNA profiling for criminal investigations, I raise the compulsion and insurance issues to highlight the potential misuse of stronger DNA profiling laws.
I certainly don’t support the notion that everyone in New Zealand should be compelled to do a DNA test. That strikes me as being a clear breach of privacy – it’s akin to being told to hand over all your old computer hard drives. Do you really want your most personal data sitting in a government “databank” for years on end, where criminals (or worse, corporations) could get hold of it in future?
Finally, although no government has yet been handed DNA data by direct-to-consumer genetics companies, New Zealand could be positioning itself to be the first. We’ve already given our insurance companies carte blanche to request DNA data from us. Do we want our law enforcement agencies to have the means to pressure 23andMe and Ancestry.com too? It’s a dangerous road to go down.