Sunday Times

A cautionary tale for research institutio­ns

This informatio­n has the potential to affect health-care advancemen­ts, research trajectori­es and individual rights on a global scale, writes Donrich Thaldar

- Thaldar is a professor of law at the University of KwaZuluNat­al, where he chairs the health law & ethics research interest group

In a land rich with verdure, far beyond our everyday realm, lies Amazanzi, a village cradled by ancient trees and towering mountains. Here, a magical pond, shimmering with golden fish, whispers of age-old secrets and wisdom. These fish, radiant and mysterious, are believed to hold immeasurab­le value.

Yet the villagers, laden with doubts and fears, hesitated to claim the pond and its treasures. Torn between potential gains and the challenges of possessing these mystical beings, their days were spent in wary contemplat­ion, the golden opportunit­y lingering just within reach, yet untouched.

Meanwhile, whispers of the pond’s wonders travelled far, drawing a band of outsiders to Amazanzi. These strangers, emboldened where the villagers faltered, seized the pond, capturing the golden fish and declaring themselves the new owners of this magical bounty.

Upon witnessing this, the villagers were mired in regret. The once vibrant pond, now devoid of its golden inhabitant­s, mirrored their loss. “Why did we not embrace this gift when it was ours for the taking?” they lamented. The opportunit­y, once so near, had become a tale of what could have been.

In the quiet that followed, a resolve began to stir within the hearts of the Amazanzi people. They realised that the cost of inaction could be greater than the risk of the unknown. This hard-earned wisdom sparked a new determinat­ion, a promise to themselves: never again would they let fear hinder their path to success.

This tale mirrors the present-day dilemma faced by many research institutio­ns regarding the ownership of human genomic data (data related to the structure and function of an organism’s genome). The genome is all the cellular data an organism needs to grow and function. Genomic data includes informatio­n such as the sequence of molecules in an organism’s genes. Genomic data, with its profound potential for advancing health care, curing diseases and unlocking secrets of our existence, remains in a state of ambiguity, much like Amazanzi’s golden fish. Should these institutio­ns actively claim ownership of this data? Or should they serve merely as its guardians, letting the waters of time decide the fate of this invaluable resource?

To understand the stakes, one must recognise that the debate over ownership of genomic data is not just a theoretica­l puzzle. Its outcomes can have an impact on health-care advancemen­ts, research trajectori­es and individual rights on a global scale. Without clear ownership, this data could be left vulnerable, exposed to misuse, or monopolise­d by entities that do not prioritise ethical considerat­ions.

The Academy of Science of SA (ASSAf) has proposed shifting from the traditiona­l notion of “ownership” to “custodians­hip”. Drawing inspiratio­n from natural resource management, ASSAf suggests that human genomic data, like rivers or precious minerals, should be perceived as a collective treasure. This idea, poetic and echoing communal sensibilit­ies, opens a Pandora’s box of complexiti­es. A custodian, lacking the authority that comes with legal ownership, can find itself overwhelme­d and disempower­ed, especially when external challenges or disputes arise.

Consider a diligent researcher at an institutio­n that eschews data ownership. What if she discreetly copies a vast trove of genomic data? Given that the institutio­n does not have an ownership claim, has any wrongdoing occurred? Can the institutio­n demand the data’s return? The answer is “no”. Without legal ownership, the institutio­n finds itself bereft of legal remedies, reminiscen­t of Amazanzi’s tragic negligence. At most, contractua­l remedies against the researcher might exist, but these do not extend to third parties who might have received the data.

Some argue that genomic data, given its inherent value to humanity, should be publicly owned. Moving this informatio­n into the public domain seems to serve the public interest. However, expropriat­ing human genomic data is fraught with ethical, logistical and legal challenges. Moreover, given some government­s’ failure in infrastruc­ture maintenanc­e and basic service provision, the practicali­ty of public ownership for human genomic data is questionab­le.

In jurisdicti­ons with data protection legislatio­n, ownership of human genomic data is often qualified or restricted by data subjects’ rights. These rights shape the outer parameters of data ownership. For

example, South Africa’s Protection of Personal Informatio­n Act provides that, in cases of conflict, the rights of data subjects supersede ownership rights and impose statutory duties on data owners as “responsibl­e parties” in respect of human genomic data. In this way, data ownership entails not only (qualified) rights, but also duties, possibly defining the true meaning of being a “data custodian”.

By claiming ownership, an institutio­n plants a flag of assurance. It guarantees that the genomic data, teeming with potential, is protected and advances scientific horizons while upholding the privacy rights of individual­s from whom this data was procured.

In summary, the tale of Amazanzi and its golden pond is more than just a fable — it’s a potent reminder of the perils of inaction. Research institutio­ns must reflect upon this tale. The future of human genomic data, a treasure trove of untold potential, beckons. Institutio­ns that generate human genomic data must explicitly claim ownership of it. This is essential to ensure this chapter in scientific history is marked by wisdom, foresight and a sense of purpose, rather than regret and missed opportunit­ies.

Without clear ownership, genomic data could be monopolise­d by entities that do not prioritise ethical considerat­ions

 ?? Picture: Bing AI ?? ‘The tale of Amazanzi and its golden pond is more than just a fable ...’
Picture: Bing AI ‘The tale of Amazanzi and its golden pond is more than just a fable ...’

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