As Francis S. Collins, director of the National Institutes of Health, says: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.” The regulations governing this sort of research were written in the 1970s, long before anyone imagined what you could learn from a bit of DNA. They are largely based on the now outdated belief that if samples are “anonymized” (i.e., your name is removed), there’s no need to get consent before using them in research.

The problem, says Yaniv Erlich, a fellow at the Whitehead Institute for Biomedical Research, is that anonymity vanishes when it comes to DNA: “People don’t realize it’s impossible to hide genetic information once it’s out there.” He and his colleagues recently proved that it’s possible to use online public databases to find the identities of people whose anonymous DNA samples had been sequenced and published online. Yet researchers aren’t required to tell you that there is no guarantee that a genome, once sequenced, will stay private or anonymous.

More than a year and a half ago, the N.I.H. and several government organizations proposed changing current regulations to require consent for tissue research, genome sequencing and sharing private data. The proposal generated public comment but nothing changed, and science continues to move forward with speed, potential and outdated regulation.

The Lackses’ experiences over the last 60 years foretold nearly every major ethical issue raised by research on human tissues and genetic material. Now they’re raising a new round of ethical questions for science: though their consent is not (yet) required for publishing private genetic information from HeLa, should it be? Should we require consent before anyone’s genome is sequenced and published? And what control should gene-sharing family members have?

The Lacks family is proud of HeLa’s contributions to society, and they don’t want to stop HeLa research. But they do want to learn about the HeLa genome — how it can be used for the good of science while still protecting the family’s privacy — so they can decide whether to consent to its publication. And they want researchers to acknowledge that HeLa cells are not anonymous and should be treated accordingly.

After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.

The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent.

In the three years since my book about HeLa was published, the Lacks family and I have spoken to audiences by the thousands about these issues. Public response is overwhelmingly consistent and in line with several studies: the public supports the science and wants to help it move forward. But that support is dependent on consent and trust.