Greater control over genomic data privacy Greater control over genomic data privacy

As we stand on the brink of the personalized medicine era, breakthroughs in areas like genomics are opening up a whole new range of privacy, reliability and security issues. Embedding security and privacy within strategy empowers Life Sciences companies and society in general to ultimately leverage the potential of scientific advances for patients.

Genomic data is extremely personal – a veritable map of an individual’s personal genetic makeup. This blueprint is complemented by wearable technologies and complex data generated by “quantified self” trends. The result is a complex and comprehensive picture of the individual and a roadmap for physicians and Life Sciences firms seeking the best – personalized – therapies for patients.

Privacy requirements and cyber security risks can delay research and licensing, which are already time-consuming processes. Bureaucratic delays are not in the interests of patient health, or Life Sciences companies’ profits. The many different stakeholders involved in handling data – at different locations around the world – need to commit to transparency so patients (or consumers) can understand how their data is being used and are empowered to balance related benefits and risks. Putting patients at the center of a genomic data strategy is also an investment in trust and reputation, valuable assets for any Life Sciences player.

Privacy, reliability and security must be kept in mind at every stage, from data creation, collection and processing to storage and transfer. A clear understanding and enforcement of accountability becomes important as data in the value chain is processed across organizational boundaries. Data is only as secure as the weakest link in the chain. So it’s vital to cultivate a culture of awareness, and implement a rock-solid data protection basis on which to build.

Companies also need to have a solid understanding of regulatory privacy requirements, e.g. consent under EU’s GDPR or the equivalent Swiss provisions, and comply with them at every stage of data handling. Much lamented by some industries as a bureaucratic obstacle course, rigorous data protection laws like GDPR can actually serve as a competitive plus for genomics players. Stakeholders can be confident of a certain security standard from compliant providers, while compliance programs help providers ensure that key aspects like informed consent are considered.

Besides legal knowledge, players in the genomics market need deep and detailed knowledge of available technology. Nascent tools in particular may not be widely known or understood except in expert circles. Outsourcing or strategic acquisitions can secure quick access to the right expertise.

Powerful data-driven technology has the potential to deliver valuable insights and clinically-relevant information. In fact, recent technological advances such as homomorphic encryption or privacy-preserving machine learning allow to extract insights from data without making in accessible centrally or reveal individual records to third parties.

It’s important to harness that potential with the right know-how. At the same time, it’s essential to protect genomic data and trade secrets: No small task given that Life Sciences companies are an attractive target for cyber attackers.

With strengths in Life Sciences, technology, laboratory rigor and trust, Switzerland is well positioned to benefit from the genomics trend. To position itself as a pioneer in the development of personalized medicine, it’s important that genomics players build on this good starting position and commit to high data privacy, reliability and cyber security standards. If Life Sciences firms and healthcare providers consider data privacy and cyber security appropriately at an early stage, they actually serve as key enablers of genomics.

Get more insights in our publication: Driving value from genomics in Life Sciences (PDF)