Mrs. Lacks’s story is unusual because she lost her anonymity. But I’ve talked to other still-anonymous donors with strikingly similar experiences. Like the Lacks family, they’re proud they helped science. They believe tissue research is important, but they wish they’d been asked permission from the start, to avoid difficulties that followed: the shock of learning they were part of research, debates over who controlled samples, questions over profits. I’ve also heard from scientists and medical professionals who believe this transparency is overdue. And patients who want to control their tissues to, say, ensure their samples are used to study only their specific rare disease.

So far, few of these people are part of the discussion. The Common Rule changes, like most such proposals, haven’t been widely publicized, and they’re laid out in a thick document even experts find confusing. But the Department of Health and Human Services has posted a brief summary and several explanatory videos. With few exceptions — like a public health emergency — the revised rule would require informed consent for research on all biospecimens, but not all genetic information inside them. How detailed that consent will be is up to researchers, but it can’t be less than “broad consent.” In a widely criticized move, the consent form template that would generally be required for “broad consent” hasn’t been released yet. Much of the debate has focused on what that form might look like, whether it can qualify as informed consent, and how much of a burden it might be.

According to sources involved in the rule-making process, “broad consent” would look like this: When you show up to the doctor, you’d get a form saying, essentially, We want to store your tissues for future biomedical research; we can’t tell you exactly what that research might involve, and you can’t specify how your tissues are used. We may share your identity with other researchers, with privacy protections in place. And we may contact you for future research. Is that O.K.?

That form would disclose any potential for commercial profit and whether donors would be compensated. Once you gave consent, those samples could be used in research indefinitely, and new samples could be collected for 10 years. Research on your stored samples generally would not require further consent or ethical review, unless a scientist wanted to share results with you from research done on your samples (a setup some critics see as a decrease in protection, and a disincentive to sharing information with donors). These requirements would apply only to future samples, not the millions already stored. And this could all change depending in part on public input.

Many commenters so far argue that these changes will lead to what they call “administrative burden” and decreased tissue access that will bring science to “a halt.” Some propose an opt-out system, making participation the default. Much concern centers on time, funding and how to track samples and consent. But some stems from misunderstanding. For example: Numerous comments from scientists say things like, “I CANNOT imagine needing to do this every time I request a sample from the blood bank.” But nothing would change for that scientist — existing anonymous samples wouldn’t require consent, and new ones would have been banked with consent. Many biobanks already use similar systems voluntarily. The only universal agreement seems to be on the need to educate the public about tissue research.

Here’s some of what the people revising the Common Rule would like to hear from the public: Should scientists have to ask permission to use all leftover clinical samples? Would you say yes? Is broad general consent enough, or do you want options for more control? Why? Should this apply to both tissues and genetic information, anonymous or not? And what if this slowed scientific progress?

People’s answers depend on many personal factors. Some believe their souls live on in the disembodied cells. Others feel anonymous biospecimens are of no consequence to the person they came from, so it’s unethical not to use them to advance science, especially since everyone hopes to benefit from such research when they’re sick. Some worry that genetic information will be linked to them, their families or their cultural group in harmful or discriminatory ways — particularly minorities.

I know many out there feel strongly about all of this. They have until Jan. 6 to tell the people making the rules.