Tactics to Handle Genomic Data

Companies should appoint a Data Protection Officer (DPO) to manage IT, Legal and other roles involved in processing genomic information, to vouch for reliability, trustworthiness, and completeness of data, and confirm legal consent for its use.

FREMONT, CA :All life sciences companies need strong internal policies to keep data safe, accessible, and reliable; policies that apply to all customers/patients, suppliers, and partners, guarantee confidentiality and pseudonymity and prevent data tampering. With fake news, data leaks, and breaches dominating the news, data trust has become a critical issue. The core pillars of a solid genomic data strategy are outlined below.

Privacy

Personal data should be used for restricted purposes and in accordance with the standards set with the user at the time of data collection to preserve and foster individuals’ trust. Individuals whose genomic, health, and lifestyle data is being collected should receive transparent and usable privacy notifications. The best format for notice requirements should also be considered: for example, ‘Just in Time’ alerts can go a long way toward meeting the transparency requirements for people who use wearable devices. Organizations that use genomic data must also consider the most appropriate legal framework for processing the data (taking into account GDPR provisions and other applicable privacy laws), as well as their ethical stance on using people’s data for medical research.

Governance

Companies should appoint a Data Protection Officer (DPO) to manage IT, Legal and other roles involved in processing genomic information, to vouch for reliability, trustworthiness, and completeness of data, and confirm legal consent for its use. One of the main governance priorities is to balance the appetite for new products with a dedication to reliable and trustworthy trial reporting to prevent any inaccuracies that could backfire in the future. The way data is handled should be viewed from a regulatory standpoint and from a security standpoint.

Cybersecurity

As the threat continues to grow—with high stakes—life sciences companies and the industry as a whole will need to devote more resources to managing cyber risk. European governments meet with major life sciences firms regularly to discuss cross-industry working groups. Everyone is responsible for cybersecurity, and it starts at the top. Leadership and all executive management team members should be dedicated, and that dedication should be felt at all levels of the organization. Raising awareness, conducting training and simulation exercises, tracking threats, evaluating and identifying vulnerabilities, developing processes to correct flaws, implementing disclosure policies, and constructing frameworks to mitigate cyber risks are examples of best cybersecurity practices.

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