Last week, a group of scientists announced that they had sequenced the genome of Henrietta Lacks. Though Henrietta Lacks lived and died many years ago, her cells, known as HeLa cells, live on today and have been used in many of the most cutting edge and exciting research projects of the last 60 years. Wonderful medical advancements have come from research using HeLa cells, including advancements in vaccines, cancer drugs, and infertility treatments. However, their use is ethically complicated because Ms. Lacks never knew that her cells were going to be used for research. Her family didn’t even learn of their use until 20 years after her death. In the New York Times this weekend, author Rebecca Skloot, who became close with the Lacks family while writing the best-seller The Immortal Life of Henrietta Lacks, reflects on this latest use of HeLa cells.
The Reg4ALL team was interested to see that “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.” This is in line with what we’ve heard when we talk to people about Reg4ALL. As the article also points out, there is strong public support for scientific research, “but that support is dependent on consent and trust.” At Reg4ALL, we work hard to maintain your trust, and we make sure that you are never surprised by where your information is going or what it’s being used for. That’s what’s so great about Reg4ALL; it gives you the tools to easily consent to whatever you’re comfortable with. You can see all of the information that you have in the system, and you can store it there safely without fear of it being used in a way that you would be uncomfortable with. And if you decide it’s right for you to contribute that information to scientific research, Reg4ALL will help you share whatever pieces of information you’d like, with whomever you’d like. Reg4ALL is a research platform that you can trust.