We should be glad the FDA put a temporary stop to its marketing but we need a far broader public debate on how to ensure that consumers don't give up valuable personal data in general without being fully informed of its value and creating the option for consumers to opt out of data sharing and aggregation all together.
All of us have cancer narratives that shape our lives, and we have little choice about how those narratives begin. But we do have a choice about how we respond. We can control our own information, and we can make it public and accessible to everyone who is working towards a better future for us and our children.
Like Henrietta Lacks' family, millions of us will soon confront questions about our genomes. We should learn as much as we can, and plan more carefully now, before it is too late. Our genomic data may reveal aspects of our fate, but we can still potentially control how and when the information is used.