Daily Bulletin


The Conversation

  • Written by Jon Cornwall, Senior Lecturer, Faculty of Health, Victoria University of Wellington

Death is inevitable. The creation of healthcare records about every complaint and ailment we seek treatment for is also a near-certainty.

Data about patients is a vital cog in the provision of efficient health services.

Our study explores what happens to those healthcare records after you die. We focus on New Zealand’s legal situation and practices, but the issue is truly a global one.

Read More: Decades on from Henrietta Lacks, we’re still struggling to find an adequate consent model

Previously, healthcare records were held in paper form and stored in an archive. Next came the advent of digital storage in on-site databases. In both of these cases, when you died your records were either shredded or erased, depending on the technology.

But it is now increasingly common for healthcare records to be digitised and held in a central repository. They can potentially be held for an indefinite period after someone dies, depending on the jurisdiction.

Should we be worried?

A question of value

Large, population-based healthcare data sets have immense value.

This is particularly true of records that include genomic information alongside other healthcare data – a phenomenon that will only increase as information about a person’s genes is more widely used in clinical treatment.

These posthumous healthcare data sets, which will grow in size and detail over the coming decades, could tell us a great deal about diseases and heritability. Data sets from generations of families and communities may well be available for research, and able to be analysed.

Information on this scale is worth a lot, especially for data storage companies and those with a financial interest in these data sets, such as pharmaceutical companies. Imagine, for instance, if a company could quickly analyse millions of genomes to isolate a disease that could be cured by an engineered pharmaceutical, and the commercial value this would create.

So how will this affect the individual whose data is held and their surviving family? Many people would be willing to donate medical records if the downstream result was beneficial for their community and country.

Yet the lines become easily blurred.

Would it be acceptable if data sets were sent to foreign companies? What if they provided a cure free of charge to the families of citizens whose data they used?

How about if the cure was half price, or full price, but the other option was having no cure at all? Would it be all right for companies to make millions of dollars out of this information? There is no easy answer.

image Every time you visit a doctor’s office, you create data. Keith Bell/Shutterstock

What’s the legal situation?

It’s impossible to talk about the long term fate of healthcare data without considering privacy and consent.

As part of medical research, for example, participants are required to provide informed consent and often the gathered data are anonymised. Access to posthumous medical records, on the other hand, is not highly regulated or protected in most countries, and the laws surrounding access are incredibly unclear.

In New Zealand, a deceased person has no privacy rights under the Privacy Act. And while healthcare data has to be held for a minimum of 10 years after death, the regulatory body which is then custodian of that data may decide - broadly - what purposes it may be used for.

Given that the custodian can be anyone from a health board or local doctor to a commercial institution that stores health records, the situation is exceedingly vague.

Read More: Human embryo CRISPR advances science but let’s focus on ethics, not world firsts

It is often argued that use of anonymous data sets do not require consent from an individual – in our case, a deceased person cannot provide this anyway. However the lines of true “anonymity” are becoming more blurred, particularly thanks to genomics.

Your own genome is partly that of your family and relatives. They may also have an emotional stake, and possibly a legal stake, in any action or research where the genome of a deceased family member is involved.

The medical profession has not always dealt well with consent and ethics issues. In one infamous case, the cancer cells of Henrietta Lacks – a 31-year-old American woman who died of cervical cancer in 1951 – have been used thousands of times in research projects.

She unwittingly made an invaluable contribution to global health, yet she never consented and her family was not consulted.

Then there is the fact that if large data bases are readily available, the possibility of data linkage increases – matching data sets that may belong to the same person – potentially undermining the ability to maintain true anonymity for the individual and their family.

What happens now?

The New Zealand and Australian governments have signalled that healthcare data are a widely underused resource. Commercialisation of such data is a possibility.

At some point, large posthumous healthcare data sets from these countries could potentially be accessed by researchers and private institutions around the world.

It is time for the public to decide what they think is reasonable. If the use of posthumous healthcare data is not aligned with the wishes of society, especially its desire for anonymity, the trust between our healthcare providers and patients may become compromised.

Healthcare data sets have immense value, but the public must be consulted about their use. Only then can the potential of posthumous healthcare data sets be properly realised.

Authors: Jon Cornwall, Senior Lecturer, Faculty of Health, Victoria University of Wellington

Read more http://theconversation.com/our-healthcare-records-outlive-us-its-time-to-decide-what-happens-to-the-data-once-were-gone-81325

Writers Wanted

'Severely threatened and deteriorating': global authority on nature lists the Great Barrier Reef as critical

arrow_forward

'Unjustifiable': new report shows how the nation's gas expansion puts Australians in harm’s way

arrow_forward

The Conversation
INTERWEBS DIGITAL AGENCY

Politics

Prime Minister Interview with Ben Fordham, 2GB

BEN FORDHAM: Scott Morrison, good morning to you.    PRIME MINISTER: Good morning, Ben. How are you?    FORDHAM: Good. How many days have you got to go?   PRIME MINISTER: I've got another we...

Scott Morrison - avatar Scott Morrison

Prime Minister Interview with Kieran Gilbert, Sky News

KIERAN GILBERT: Kieran Gilbert here with you and the Prime Minister joins me. Prime Minister, thanks so much for your time.  PRIME MINISTER: G'day Kieran.  GILBERT: An assumption a vaccine is ...

Daily Bulletin - avatar Daily Bulletin

Did BLM Really Change the US Police Work?

The Black Lives Matter (BLM) movement has proven that the power of the state rests in the hands of the people it governs. Following the death of 46-year-old black American George Floyd in a case of ...

a Guest Writer - avatar a Guest Writer

Business News

Nisbets’ Collab with The Lobby is Showing the Sexy Side of Hospitality Supply

Hospitality supply services might not immediately make you think ‘sexy’. But when a barkeep in a moodily lit bar holds up the perfectly formed juniper gin balloon or catches the light in the edg...

The Atticism - avatar The Atticism

Buy Instagram Followers And Likes Now

Do you like to buy followers on Instagram? Just give a simple Google search on the internet, and there will be an abounding of seeking outcomes full of businesses offering such services. But, th...

News Co - avatar News Co

Cybersecurity data means nothing to business leaders without context

Top business leaders are starting to realise the widespread impact a cyberattack can have on a business. Unfortunately, according to a study by Forrester Consulting commissioned by Tenable, some...

Scott McKinnel, ANZ Country Manager, Tenable - avatar Scott McKinnel, ANZ Country Manager, Tenable



News Co Media Group

Content & Technology Connecting Global Audiences

More Information - Less Opinion