22 Matching Annotations
  1. Jul 2022
    1. Published in 2010, Rebecca Skloot’s book The Immortal Life of Henrietta Lacks, offers a three-fold story.  It is the story of the development of the first immortal human cell line (called HeLa) and the scientific advances facilitated thereby. It is also the story of the African American woman from whom the cell line came: Henrietta Lacks was the great-great granddaughter of slaves, who grew up in extreme poverty in Virginia in the 1920s and who died of an aggressive cervical cancer in 1951 in the ward for “colored people” at Johns Hopkins Hospital. Finally, it is the story of her family members, who had no idea about the existence, importance and the financial gains made from HeLa cells until Skloot began her research.   This book sparked more than just an HBO film by the same name starring Oprah Winfrey, it also sparked an attempt at broad policy change in the U.S. regarding consent procedures for human tissue research. Currently, the regulations on research with human subjects issued by the Department of Health and Human Services (HHS) mandate informed consent for the use of biospecimens in research when those specimens are taken specifically for the purpose of research. However, no informed consent for research use is required for tissue samples taken in the course of clinical practice. In 2015, HHS proposed a rule change to give patients much greater control over the use of their biospecimens in research. Yet this effort failed due to backlash from the scientific community.   In this paper, I shall address some of the major arguments against such regulatory changes. For instance, Chadwick & Berg stress a duty to participate in research for the benefit of others; Knoppers & Chadwick further criticize the emphasis on individualism and autonomy over the value of solidarity in contemporary research ethics and policy. My aim is to counter these arguments and to support the proposed regulatory changes in the U.S. regarding tissue research. I hope to highlight important contemporary lessons we have yet to fully appreciate from the case of Henrietta Lacks.

      Skloot sparks interest in HeLa cells.

    1. In Henrietta Lacks’s centennial year, researchers must do more to ensure that human cells cannot be taken without consent.


    2. That day in Erika Johnson’s high-school biology class, some 20 years ago, is seared into her memory. The teacher was leading the students through experiments involving cells from a widely used line known as HeLa. The cell line originated from tissue taken from a woman named Henrietta Lacks — and Johnson’s mother was a Lacks. “This is my great-grandmother I’m holding in my hand,” Johnson remembers feeling. “It was a very surreal situation.”Last month marked 100 years since Lacks’s birth. She died in 1951, aged 31, of an aggressive 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 disease. They gave some of that tissue to a researcher without Lacks’s knowledge or consent. In the laboratory, her cells turned out to have an extraordinary 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 modern 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-19.But the story of Henrietta Lacks also illustrates the racial inequities that are embedded in the US research and health-care systems. Lacks was a Black woman. 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 back to her family. And, for decades after her death, doctors and scientists repeatedly failed to ask her family for consent as they revealed Lacks’s 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 another HeLa line1 after the Lacks family reached an agreement with the US National Institutes of Health (NIH) to approve its release. Racism in science: the taint that lingers Now, the extraordinary events of 2020 — the #BlackLivesMatter movement for racial justice, and the unequal 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 research, or even an end to their use entirely. The argument is that, because the cells were obtained without Lacks’s knowledge or consent (even though this was legal at the time), any use of them is unethical and perpetuates an injustice.But that is not what many Lacks family members want. Henrietta Lacks has dozens of descendants, several of whom are leading a new effort in her centennial year, #HELA100, that instead calls for people to celebrate her life and legacy. “I want scientists to acknowledge that HeLa cells came from an African American woman who was flesh and blood, who had a family and who had a story,” her granddaughter Jeri Lacks-Whye told Nature.And there 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 arms. She dressed stylishly and wore red nail 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 most important thing about HeLa cells is how they have advanced cancer research — a fitting tribute, given that Lacks died of the disease. Many people have also told him that they were able to conceive a child because of in vitro fertilization, which was developed with the help of HeLa cells. “They were taken in a bad way but they are doing good for the world,” he says. And they do so for people of all ethnicities.Policy reviewOver the past decade, scientists and the Lacks family have worked together to establish stronger rules to govern the use of these precious specimens. But there is still much work to be done.First is action on consent. NIH director Francis Collins has signalled that he wants the research community to consider changing the Common Rule, the set of policies that protect human participants in research funded by the US government2.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. Most popular human cell in science gets sequenced Earlier efforts to make this change failed in 2017, but now is the time to revisit the Common Rule, and to reconsider the question of consent. In the past, some researchers have warned that this would impose additional burdens. But a compromise must be found. The last time the US Department of Health and Human Services worked to revise the Common Rule, it proposed a series of other changes at the same time; perhaps one way forward is to tackle the question of consent for biospecimens on its own, and with thorough discussion involving not only scientists, but also the public.A second, separate step must be to acknowledge and undo the disparities that are baked into basic research — because the systemic racism that existed when Lacks’s cells were taken still exists today.In the current climate of reckoning with racial injustice, some researchers who use HeLa cells have concluded that they should offer financial compensation. For example, a laboratory at the University 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 book about Lacks. The foundation awards grants both to Lacks’s descendants and to family members of others whose bodies have been used without consent for research. Other institutions and researchers must examine whether — and how — their own work builds on past injustices. And they must consider how best to make amends.COVID-19, a disease 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 research. To give back now, researchers should not only study why the disease is more prevalent and severe among Black people, but also help to implement solutions to close the gap. And, once a vaccine is available — possibly as a result of work with HeLa cells — researchers must work with marginalized communities to see that it reaches those who need it most.The fact that Lacks’s cells were taken in a different era of consent will never justify what happened. The past cannot be undone, but we must acknowledge the wrongs of previous generations, and those wrongs that persist today. Justice must be done, and the time to start is now. Nature 585, 7 (2020)

      Great article by Nature.com about HeLa cells and their 100 year anniversary. Most recently used with Covid-19 vaccines

    1. Holden embraced the choice that had been made for him; his companion clearly hasn’t. She’s since taken her Instagram offline after receiving some harassing comments, at least one of which was related to Blair’s speculation about what happened when the pair simultaneously got up to use the restroom (and Holden’s cheeky comment that “a gentleman never tells” when asked about it). Of course, the sexual implication is something he’d be praised for, while the woman is attacked.

      Holden is praised for his comments while his seatmate is vilified. It doesn't seem right, should it be the other way around?

    2. As with so much else that is mediated by the internet, the medium’s dissociative effects prevent us from centering the humanity of the people involved.

      Holden's and his seatmate's story became something they did not intend and this is the inherent danger in social media. Its almost like a free for all with no consequences

    3. The mystery man revealed himself on Twitter as former soccer player Euan Holden and gave Blair permission to share his Instagram and reveal his name. He has eagerly taken a liking to his newfound social media fandom and embraced the moniker of “Plane Bae,” even appearing on NBC’s Today to bask in the attention.

      Did Euan Holden's consent make it okay? "Milking it" for publicity? What about her consent? This is disconcerting.

    1. Richard Dawkins is credited as having coined the term in The Selfish Gene (1976). Memes are the units that transmit ideas, behaviors, styles and usage within a culture through a variety of media, like nursery rhymes passed down from parent to child.

      Appreciate this simple explanation..passing information using many different modes

    2. so memes propagate themselves in the meme pool by leaping from brain to brain via a process which, in the broad sense, can be called imitation.”

      Great analogy explaining memes pre-internet. Replicating and spreading just as memes in the present do. Interesting that term "meme" coined in 1976 by Dawkins

    3. Lantagne and Patel agree on the inability of copyright law to fully address the subject of memes, given their cultural importance as what Lantagne calls “pure engines of expression with their own symbolic vocabulary” while also relying, in Patel’s words, on “massive unauthorized copying” to attain such importance.

      Copyright laws and memes. If memes are considered ideas then they are not protected under copyright.

    1. Truog, Robert D.Kesselheim, Aaron S.Joffe, StevenSource:Science. 7/6/2012, Vol. 337 Issue 6090, p37-38. 2p.

      Payment for tissue" donation " without consent

    1. Pressley: How many extremist murders has the FBI linked to Black Lives Matter or similar black activist groups? McGarrity: We don’t work Black Lives Matter it’s a movement. It’s an ideology. We don’t work that. Pressley: So the answer is none. Can you just say that for the record? There has been no killing that the FBI can link to black Lives Matter or similar black activist groups, to your knowledge.McGarrity: To my knowledge—I’d have to go back—but to my knowledge, right now, no

      This angered me though it didn't surprise me.

    1. Or maybe — here’s a thought — find a similar article from some other site that hasn’t been called a white supremacist organization by half a dozen mainstream groups. Because no matter what you think of the article, funneling friends and family to a site that has published such sentences as “When blacks are left entirely to their own devices, Western civilization — any kind of civilization — disappears” is not ethical — or likely to put you in the best light.

      What we share says so much about who we are. Not to minimize this topic---it's like a bumper sticker...you get a sense of who they are.

    2. In this case, the URL does match. What does this look like if the site is fake? Here’s an example. A while back a site at bloomberg.ma impersonated the Bloomberg News site. Let’s see what that would look like: You do the same steps. In this case Bloomberg News is not the top result, but you scroll down and click the Bloomberg News link, and check the URL and find it is different. If you’re lazy (which I am) you might click that link to get to the real site.

      This is very useful information that I can apply to my rersearch and web-browsing. Thank you

    1. Today, these incredible cells — nicknamed "HeLa" cells, from the first two letters of her first and last names — are used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio and COVID-19 vaccines.Although Mrs. Lacks ultimately passed away on October 4, 1951, at the age of 31, her cells continue to impact the world.

      Fascinating information

    1. The new knowledge culture has arisen as our ties to older forms of social community are breaking down, our rooting in physical geography is diminished, our bonds to the extended and even the nuclear family are disintegrating, and our allegiances to nation-states are being redefined.

      Spoiling as Collective Intelligence (excerpt from Jenkins 2006 book, Convergence Culture: Where Old and New Media Collide