The life sciences sector must balance innovation with data privacy

26 Apr 2021

Image: © elenabsl/Stock.adobe.com

As developments in life sciences become more innovative than ever, the need for data will be critical. But so will the need for data privacy, writes Jenny Darmody.

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If data is the new oil, and our health is our wealth, what is our health data worth?

No, I haven’t just given you a riddle to figure out on a Monday morning, though I wish that’s what it was. Riddles tend to be easy once you know the answer. Unfortunately, this is a much more complex question with no easy solution.

The life sciences industry is a thriving one, particularly here in Ireland. From Irish-born medtech start-ups to long-established biopharma multinationals, this small country punches well above its weight when it comes to life sciences.

And if the last year has shown us anything, it’s the importance of the life sciences industry. As Accenture’s Barry Heavey wrote last June: “Never before have our biopharma, medical device and diagnostics supply chains and operations been so vital.”

We may still be facing months of uncertainty when it comes to the pandemic, but at least there are vaccines. Multiple vaccines. Vaccines that were created in record time. Vaccines that arguably would not be here without the vital research and data needed to create them.

And it’s not just vaccines. Earlier this year, an initiative was launched to allow registered researchers to safely and securely access Ireland’s Covid-19 data hub. This would provide researchers with data that could be used in valid research projects to advance medical treatments, health service delivery and inform policy and planning across both Government and wider society.

Now consider the potential benefits of such a data hub for every other health condition. The future of life sciences combined with the power of big data could be truly phenomenal. But the increased use of data can also a double-edged sword.

‘We have inherent structural problems when it comes to performing data-intensive research while protecting the privacy of those being studied’
– JOHN GREALLY

I touched on this last year in an interview with Marielle Gross, a doctor and bioethicist. She said that in order to provide the best possible care, she ideally wants to learn from every patient and be able to share everything she learns with her colleagues, and vice versa.

“But that means, in a sense, treating all patients like research subjects, at least in some regard,” she said.

Seeking to dig into this more, I spoke to John Greally, a clinical geneticist and medical genomics researcher working at the Albert Einstein College of Medicine and Montefiore Medical Center in New York.

The field of genomics specifically focuses on the structure, function, evolution, mapping and editing of DNA. The field is rife with both exciting, data-driven advancements as well ethical concerns.

“We have inherent structural problems when it comes to performing data-intensive research while protecting the privacy of those being studied,” Greally said.

“The study participants may be attracted by the goal of the study, but may not realise the privacy risks involved, especially as the data and questions involved become more complex, something highlighted by genomics research at present. Institutional review boards are placed in the unenviable position of having to police the relationship between researcher and study participant.”

Aside from the ethics of using someone’s data in research, there’s also the issue of managing and storing that data. While advances in tech and big data could transform the future of the life sciences industry, increasing cyberattacks could become a greater problem.

A 2019 report from cybersecurity company Carbon Black found that personal health data is three times more valuable to hackers than credit card information.

And with the pandemic providing a golden opportunity for hackers and scammers, life sciences companies have become a particularly attractive target.

No easy solution

Like I said, my opening line was not a riddle with a straight answer. But food for thought is enough to open the discussion and pave the way for possible solutions.

From a personal data point of view, Greally said one avenue worth exploring is to find ways of leading data-driven studies so that decisions are being made at least in part by the people who are participating.

“It is not enough to offer access to genomic data, if that is not of value to the community,” he added. “If, however, the rewards for participation are of tangible and clear value to the community, and the leadership of the study involves the people being studied, that is much more likely to be a formula for respect, trust and protection of the study participants.”

As for the cyberattack side of the coin, it’s equally as complex. According to a report published in the Journal of Big Data, there are various challenges associated with each step of handling this volume of data, which can only be overcome using high-end computing solutions for big data analysis.

“Organisations must choose cloud partners that understand the importance of healthcare-specific compliance and security issues,” it said.

Data is essential for the future of healthcare, the future of pharma and the future of life sciences as a whole. It fuels much of the research that leads to groundbreaking innovations and miraculously fast vaccines. As overstated as it may be, there’s a reason we call data the new oil.

But just like oil, it’s a valuable resource and extensive damage can be done when it’s in the wrong hands. That is something all sections of the life sciences industry need to bear in mind.

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Jenny Darmody is the deputy editor of Silicon Republic

editorial@siliconrepublic.com