In the Media: Securing the Privacy of Big Data in Autism Research
Many families who are enthusiastic about participating in autism research—or having their children do so—also fear that their personal health information could leak out online or get into the wrong hands, exposing them to stigma or discrimination. U.S. federal data-privacy laws such as the Genetic Information Nondiscrimination Act (GINA) offer some protection, but they may not go far enough. “There are a number of people who have been talking about [whether] we really need to look at GINA in the context of big data and the merging of these databases,” said Hastings Center research scholar Karen J. Maschke, in an interview in Spectrum. Read the article.
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