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opinion

Adam Kassam is a senior resident physician in the department of Physical Medicine & Rehabilitation at Western University and writes regularly on health care, public policy and international affairs

It was announced recently that British drug giant GlaxoSmithKline would be making a US$300-million equity investment in the personal genomics company 23andMe. The goal of the exclusive collaboration is to “focus on research and development of innovative new medicines and potential cures, using human genetics as the basis for discovery.”

GSK is one of the largest pharmaceutical companies in the world, with close to US$26-billion in annual revenue, having had success in the development of drug treatments for respiratory illness and HIV/AIDS. 23andMe is a biotechnology firm that sells a direct-to-consumer DNA testing kit, where close to five million clients have provided a saliva sample for individualized genetic sequencing and genealogic analysis.

This new partnership represents the steady march toward the field of personalized medicine, where bespoke drugs can be created by using an individual’s unique genome to maximize therapeutic effect. In theory, this is an important goal to work toward, especially in the context of research that shows the effectiveness of pharmacotherapy is altered by elements linked to one’s genetics.

The methodology for achieving this innovation, however, is very much up for debate. That’s because it ultimately requires broad access to people’s genetic information. Recent data scandals involving companies such as Facebook serve to highlight the perils of privacy breaches if health-care data is either hacked or sold without permission to third parties.

The language of the companies’ agreement suggests that GSK will only have access to those 23andMe customers who voluntarily participate in ongoing research. The real question is whether consumers should believe them. While we don’t know how many 23andMe clients will opt-in, it is questionable if GSK, which effectively becomes a sizable share owner, will be restricted in mining useful customer data, regardless of consent.

Access to health-care information will become increasingly fraught with risk as the industry makes the transition to comprehensive electronic medical records (EMRs). Data integration across a variety of health-care verticals is already taking place, and Big Pharma has demonstrated an appetite for involvement in Canada.

For example, a recent investigation reported that a number of pharmaceutical companies paid Telus Health – a subsidiary of the telecommunications giant – to insert voucher coupons for their drugs onto the EMR system used by thousands of doctors across the country. Before being banned by the Ontario Ministry of Health, this scheme would have incentivized patients to use a certain brand of pharmaceutical instead of a lower-cost generic one.

The creep of technology companies into areas that extend beyond their traditional marketplaces is a growing, and seemingly inevitable, reality. In the US$3-trillion U.S. health-care industry, which has a reputation for evolution at a glacial pace, companies are betting that innovation will prove to be a lucrative agent for change.

This is why companies such as Google and Apple have quietly been building in-house health-care divisions to capitalize on their enormous catalogue of users. By creating powerful economies of scale through consolidation, combined with their development of an integrated suite of health care products and services, these companies will transform into super-oligopolies. In essence, they will become the arbiters of the individual and population-based health-care data ecosystem.

The concern is that users and patients may ultimately lose ownership of their individual data while simultaneously helping to enrich companies without sharing in the profits. There is also the risk that with an increase in mergers and reduced competition among the medtech and Big Pharma sectors, the price inelasticity of health care services and treatments will be exacerbated. This could ultimately lead to a crisis of affordability.

There is no doubt that innovation in the medical industry should be viewed as an incredible opportunity to provide better care. The focus on individualized treatment will continue to sharpen as genomic data collection becomes an industry standard, as shown by the GSK-23andMe deal.

As we see the medtech space accelerate in its scope and reach, it will be necessary to have a solid legal framework that is equipped with the appropriate language to protect the ownership of personal health information. Ultimately, this requires intelligent and nimble government leadership that is actively engaged with stakeholders to ensure that privacy is a cornerstone of progress.

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