Personalised medicine has the potential to improve the treatment and care of patients. This promising approach has already borne fruit, with a handful of targeted therapies for cancer now in use. For example, the molecular analysis of a tumour can identify specific genetic mutations and thereby what kind of chemotherapy would be most effective. This not only improves the patients' chances of recovery, it also saves them from having to endure unnecessary and ineffective treatments.

On the whole, however, personalised medicine is still in its infancy. To identify molecular causes of illnesses and develop tailored therapies, various data types from a multitude of sources must be aggregated. This entails collecting patient data from hospitals, the results of clinical tests, molecular and genetic data, as well as information about healthy people. Data sharing between hospitals, research institutions, clinicians and patients is thus essential. However, "to date, this kind of exchange hasn't been happening to the desired extent," says Effy Vayena, bioethicist and Professor at the Institute of Translational Medicine at ETH Zurich.

Guidelines for Switzerland
In Switzerland, the situation is set to change. Last year saw the launch of the Swiss Personalized Health Network (SPHN), an initiative created to promote the development of personalised health through the establishment of a data sharing infrastructure. Within this network, Vayena chairs an advisory committee that deals with the ethical, legal and social implications of precision medicine. "Our goal is to develop guidelines for responsible health data sharing," says Vayena.

As a first step, she and other ETH researchers investigated existing international guidelines and recommendations and analysed the range of topics they covered. They compared 230 documents published by official bodies, research institutions, expert groups and further national and international organisations between 1996 and 2017. This included publications by the Organisation for Economic Co-operation and Development (OECD), the National Institutes of Health (NIH) in the United States, and the Global Alliance for Genomics and Health. The results of this comparative study were published in the Health Affairs journal.

Important topics neglected

Their investigation highlighted that there was scarcely any cross referencing between the recommendations and guidelines and, moreover, that they were not sufficiently standardised. Guidelines focused primarily on three topics: data privacy, data quality, and the sovereign right of patients to determine how their data should be used. "These topics are very important, no question about it," says Vayena.

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