March 02, 2015

Research Data Offers Nonprofits a New Revenue Source

The Cystic Fibrosis Foundation's huge windfall from selling royalty rights to a drug whose development it helped finance is sparking greater interest among other medical charities in gaining a profit from their research data, The Philadelphia Inquirer writes. The newspaper talked to experts in philanthropy and medical ethics about the benefits and risks of venture-philanthropy initiatives they said can blur lines between financial success and medical mission.

The Cystic Fibrosis Foundation earned $3.3-billion last fall by selling its interest in Kalydeco, a drug for the inherited disorder in which the charity had invested $150-million. National nonprofits such as the Multiple Myeloma Research Foundation, the Muscular Dystrophy Association, and diabetes charity JDRF are also engaging in venture philanthropy.

Simon's Fund, a Philadelphia-area nonprofit that works to prevent sudden cardiac death in children, spent about $200,000 to build a national registry of youth heart data and "would entertain a fee for access" by private interests like pharmaceutical firms, said the charity's co-founder, Darren Sudman.