The Value of Genetic Data
Written by Dr Niamh O’Reilly


Drug development has evolved with many healthcare companies now using genetics informed drug development to create targeted and personalised therapies allowing clinicians to treat the underlying causes of a disease. Technological and data analytics advances have enabled researchers to expedite the process of mining drug development leads from vast amounts of genetic data. Genealogy companies are increasingly engaged in partnerships with universities, non-profit organisations and private healthcare companies, indicating the growing importance of genetic data to these companies. Researchers have used insights from genetic data to develop a better understanding of the mechanisms of human disease. However, it remains to be seen if the outputs from these partnerships will result in new therapies being brought to market.

Benefits of Combined Expertise

With the cost of drug development rising and healthcare companies operating in an increasingly competitive market, many are finding innovative methods of drug discovery. For many years, genealogy companies have been collecting genetic data and providing consumers with insights about their biological inheritance. Consumers typically receive information about superficial genetic traits, such as whether your hair is likely to lighten with sun exposure to more serious health related information such as the presence of a genetic mutation associated with disease. Genealogy companies have worked with regulators for permission to disclose information to consumers relating to a limited number of diseases, however strict limits remain on the information they can share due to the complex relationship between the presence of a genetic mutation and the likelihood of developing a disease (1).

Genetic data is highly valuable to researchers using techniques such as genome wide association studies (GWAS) to associate small differences in DNA sequences, called single nucleotide polymorphisms (SNPs), with diseases to find potential drug targets (2). Several genealogy companies in realising the value of large collections of genetic data have developed partnerships with universities, non-profit organisations and pharmaceutical companies to perform GWAS and other studies. For example, just one of the many well-known genealogy companies has lucrative collaborations, which enables multiple healthcare companies to access data from 80% of their over 5 million consumers who have consented to participating in research (3).

Investing in Data 

The average consumer who consents to sharing their data contributes to over 230 studies run by universities, non-profit organisations and healthcare companies (4). Through these collaborative studies researchers are seeking to better understand the genetic basis of a range of diseases including asthma, psychiatric disorders, cancers and Parkinson’s Disease to uncover new drug targets. A recent study has shown that therapies targeting a specific genetic mutation are twice as likely to receive regulatory approval, which is one of the stepping stones required to commercialise new therapies (5). While these collaborative efforts to interrogate vast genetic data sets are yet to result in the discovery of a new therapy, some would say it is only a matter of time before products discovered in this way reach the market.


CRCs experienced Medical Affairs team has the expertise to understand and utilise insights from genetic data analysis for the purpose of demonstrating therapy value and supporting Medical Affairs related projects.



  1. Hayden, E. The rise and fall and rise again of 23andMe. 2017. Nature. Available at: https://go.nature.com/2wZ1RdE
  2. A better way to find drug targets. 2017. The European Bioinformatics Institute. Available at: https://bit.ly/2GLnHco
  3. Molteni, M. 23andme’s pharma deals have been the plan all along. 2018. Wired. Available at: https://bit.ly/2MFYcJF
  4. Brodwin, E. DNA-testing companies like 23andMe sell your genetic data to drugmakers and other Silicon Valley startups. 2018. Business Insider. Available at: https://bit.ly/2NbVtsz
  5. Ma, Y. Targeted drugs score more wins. 2019. Pharma in focus. Available at: https://bit.ly/2BA70xh