There Are Much Other Families That Are of Big Importance in the Cell as Well
Nobody asked Henrietta Lacks for consent to use her cells in research in 1951 — and, shockingly, consent is even so not always required in the United States today. Credit: Jonathan Newton/The Washington Post/Getty
That twenty-four hours in Erika Johnson's high-school biology class, some 20 years ago, is seared into her retentiveness. The teacher was leading the students through experiments involving cells from a widely used line known every bit HeLa. The jail cell line originated from tissue taken from a woman named Henrietta Lacks — and Johnson's female parent was a Lacks. "This is my not bad-grandmother I'thou belongings in my hand," Johnson remembers feeling. "It was a very surreal situation."
Last month marked 100 years since Lacks'due south birth. She died in 1951, anile 31, of an ambitious cervical cancer. Months earlier, doctors at the Johns Hopkins Hospital in Baltimore, Maryland, had taken samples of her cancerous cells while diagnosing and treating the affliction. They gave some of that tissue to a researcher without Lacks'due south noesis or consent. In the laboratory, her cells turned out to have an boggling capacity to survive and reproduce; they were, in essence, immortal. The researcher shared them widely with other scientists, and they became a workhorse of biological research. Today, work done with HeLa cells underpins much of mod medicine; they have been involved in key discoveries in many fields, including cancer, immunology and infectious disease. One of their most recent applications has been in research for vaccines against COVID-nineteen.
But the story of Henrietta Lacks besides illustrates the racial inequities that are embedded in the U.s.a. research and health-care systems. Lacks was a Black adult female. The hospital where her cells were collected was one of only a few that provided medical care to Black people. None of the biotechnology or other companies that profited from her cells passed any money dorsum to her family. And, for decades after her death, doctors and scientists repeatedly failed to ask her family unit for consent as they revealed Lacks'southward name publicly, gave her medical records to the media, and even published her cells' genome online. (Following an outcry, the genome was soon removed.) Nature later published the genome of some other HeLa line1 later the Lacks family reached an agreement with the US National Institutes of Health (NIH) to approve its release.
Now, the extraordinary events of 2020 — the #BlackLivesMatter motility for racial justice, and the diff toll of COVID-19 on communities of colour — are compelling scientists to reckon with past injustices. Some have called for a reduction in the use of HeLa cells in enquiry, or even an stop to their utilise entirely. The argument is that, considering the cells were obtained without Lacks's cognition or consent (even though this was legal at the fourth dimension), any use of them is unethical and perpetuates an injustice.
But that is not what many Lacks family members desire. Henrietta Lacks has dozens of descendants, several of whom are leading a new attempt in her centennial twelvemonth, #HELA100, that instead calls for people to celebrate her life and legacy. "I want scientists to admit that HeLa cells came from an African American adult female who was flesh and blood, who had a family and who had a story," her granddaughter Jeri Lacks-Whye told Nature.
And at that place is so much to her story. Henrietta Lacks loved to cook — spaghetti was a favourite — and she loved to dance, often with one of her five children in her artillery. She dressed stylishly and wore crimson boom polish. She was the emotional and psychological centre of a home where the extended family gathered and where the door was always open to anyone in need.
To her grandson Alfred Lacks Carter, the nigh important thing nigh HeLa cells is how they take advanced cancer enquiry — a fitting tribute, given that Lacks died of the disease. Many people have as well told him that they were able to conceive a kid because of in vitro fertilization, which was adult with the assistance of HeLa cells. "They were taken in a bad mode only they are doing good for the world," he says. And they practise so for people of all ethnicities.
Policy review
Over the past decade, scientists and the Lacks family accept worked together to institute stronger rules to govern the utilise of these precious specimens. Simply there is still much work to be washed.
First is activeness on consent. NIH director Francis Collins has signalled that he wants the research customs to consider irresolute the Common Rule, the set of policies that protect human participants in inquiry funded by the US authorities2.
This revision would require consent to be obtained from anyone from whom biological specimens are taken before the samples are used in research — even if the specimens are "deidentified" from the person they came from.
Before efforts to make this change failed in 2017, merely now is the fourth dimension to revisit the Common Rule, and to reconsider the question of consent. In the by, some researchers have warned that this would impose additional burdens. But a compromise must be plant. The last time the U.s.a. Department of Wellness and Man Services worked to revise the Mutual Rule, it proposed a series of other changes at the same time; perhaps ane way forward is to tackle the question of consent for biospecimens on its own, and with thorough discussion involving not only scientists, merely as well the public.
A second, separate pace must be to acknowledge and undo the disparities that are broiled into basic inquiry — because the systemic racism that existed when Lacks's cells were taken even so exists today.
In the electric current climate of reckoning with racial injustice, some researchers who use HeLa cells accept ended that they should offer fiscal compensation. For example, a laboratory at the Academy of California, San Diego, and a UK-based biomedical company have announced donations to the Henrietta Lacks Foundation, which was established in 2010 by Rebecca Skloot, the author of a volume almost Lacks. The foundation awards grants both to Lacks's descendants and to family members of others whose bodies have been used without consent for inquiry. Other institutions and researchers must examine whether — and how — their ain piece of work builds on past injustices. And they must consider how best to brand apology.
COVID-19, a illness that is disproportionately affecting Black people in a number of countries, offers an opportunity for those who wish to usher in a fairer era of enquiry. To give back now, researchers should not simply study why the disease is more prevalent and severe amid Black people, only also aid to implement solutions to close the gap. And, once a vaccine is available — possibly as a result of piece of work with HeLa cells — researchers must work with marginalized communities to see that it reaches those who need it well-nigh.
The fact that Lacks's cells were taken in a different era of consent volition never justify what happened. The past cannot exist undone, but we must admit the wrongs of previous generations, and those wrongs that persist today. Justice must be washed, and the time to start is now.
Source: https://www.nature.com/articles/d41586-020-02494-z
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