The University of Southampton

The Lessons of the Asilomar Conference: Self-Regulation in Science and the Importance of Public Transparency

As a biomedical sciences student, what initially drew me to this module was my interest in stem cells and genetic engineering. I am currently reading The Genetic Age: Our Perilous Quest to Edit Life by Matthew Cobb, which chronicles the history of gene editing, from its advent in the 1960’s to our current day. In it, he recounts the 1975 Asilomar Conference on Recombinant DNA, and its lasting impact on how scientists maintain their ethical responsibility of public safety.

From left to right: biologists Maxine Singer, Norton Zinder, Sydney Brenner, and Paul Berg discuss the safety of experiments involving recombinant DNA in the Asilomar Conference Centre, California, 1975.

SV40 and Asilomar

In 1974, Paul Berg was attempting to use tumour-causing simian virus 40 (SV40) to introduce the E. coli lac gene into mammalian cells. He also successfully introduced SV40 into E. coli, which became one of the first successful recombinant DNA experiments. However, this led to concerns from other scientists that the bacteria containing SV40 could escape his lab and cause cancer in infected people. Berg agreed to place a temporary moratorium on all recombinant DNA experiments, leading to a lot of panic in the public, as people rightfully wanted to know just how dangerous these experiments were.

Paul Berg was born on June 30, 1926. He was a professor of biochemistry at Stanford University from 1959 to 2000 and won the Nobel Prize in Chemistry in 1980 for his contributions to the understanding of the biochemistry of nucleic acid and his pioneering work with recombinant DNA. He passed away on February 15, 2023, at the age of 96.

In 1975, Berg and around 100 other scientists in his field gathered at Asilomar Conference Centre, California to draw up safety guidelines for recombinant DNA experiments, with reporters present. Over several days, they discussed bio-safety precautions and which experiments should and shouldn’t be taken. Some took a very utilitarian approach, arguing that a few people hypothetically getting infected by an escaping virus was outweighed by the potential benefits of recombinant DNA technology, and that any guidelines were impinging on their academic freedom as scientists. Others argued that even one person hypothetically getting cancer was too much of a risk. Eventually, the participants were able to agree on safety protocol and containment strategies for recombinant DNA experiments and even prohibited some that were considered too dangerous.

The Lessons of Asilomar

In 2008, Berg published an opinion piece in Nature Magazine reflecting on Asilomar and posing the rhetorical question of whether another similar conference would resolve the current controversies in science at the time: “foetal tissue, embryonic stem-cell research, somatic and germ-line gene therapy and the genetic modification of food crops”.

While Asilomar’s participants didn’t discuss the ethical nor social aspects of genetic engineering and only focused on the health risks of the specific recombinant DNA experiments, it was the first example of wide-scale self-regulation within the scientific community. It created an expectation for the same standard of social responsibility to be applied to all future forms of genetic engineering and its associated technologies.

A re-evaluation of self-regulation

In his Asilomar opinion piece, Berg brings up an important and worrying point: most scientists in recombinant DNA research at the time worked in public institutions whereas scientists today often work for private biotechnology companies. They are at the behest of their employers, forced to place the financial interests of the companies before the health and safety of the public.

In his book, Cobb points out that public decision-making in genetic engineering has been limited so far. At Asilomar, policy was only made between scientists with some input from lawyers. There were reporters present but only for transparency’s sake; public trust was gained, but they weren’t involved in the process itself. He argues that the potential impact of today’s gene editing technologies means that “public involvement in decision-making, on the basis of open experimental data rather than secrecy and suspicion, needs to become widespread and routine” and “it is only because of public disquiet that has prompted the introduction of regulatory control that genetic engineering thus far has been safely deployed”.

My thoughts

I agree with Cobb that there must be an open and stronger line of communication between scientists and the public. Genetic engineering is a constantly evolving frontier of biomedical science, with new frontiers being discovered constantly. It is far too easy to be swept up in the excitement of it all and tumble down the rabbit hole, performing unnecessary experiments in the name of progress and notoriety, like in the case of He Jiankui’s embryo-edited twins. There are numerous ethical implications surrounding genetic engineering; it toes the line between life-saving somatic therapies and flirtations with – if taken too far – eugenics.

In 2018, Chinese biophysics researcher He Jiankui controversially announced he had used CRISPR-Cas9 to edit the genomes of the embryos of twin baby girls to be resistant to HIV infection.

Science should be for the benefit of many, not few. All people deserve to have access to important and life-saving technologies and furthermore, should have knowledge of and a say in how those technologies are regulated and applied. In his own opinion piece about Asilomar, pioneering microbiologist and conference participant Stanley Falkow wrote in 2012: “The (very privileged) social contract by which science is sustained depends on the public continuing to understand why this work is beneficial and worthwhile.” And more than a decade later, his words ring truer than ever.

References

Berg, P., 2008. Asilomar 1975: DNA modification secured. Nature, 455(7211), pp.290-291.

Cobb, M. (2022) The Genetic Age: Our Perilous Quest to Edit Life. London: Profile Books.

Falkow, S., 2012. The lessons of Asilomar and the H5N1 “affair”. MBio, 3(5), pp.e00354-12.

Henrietta Lacks: The Immortal Woman

If you’ve taken any lecture within the realm of cell biology – be it about cell division, transport, signalling, and so on – you’ve most likely encountered an experiment involving the use of HeLa cells. I certainly did, and after repeatedly seeing images of those strange, purple cells on my lecture slides, it made me wonder “What exactly is so special about HeLa cells that they are used in virtually every experiment to do with human cells?” This blog post is about these cells: what exactly makes them so remarkable, their polarising legacy, and the important bioethical discussions they raise about medical consent and racism.

An image of stained HeLa cells under a microscope.

What are HeLa Cells?

HeLa cells are an immortal cell line derived from the cervical cancer cells of Henrietta Lacks, a 31-year-old black woman and mother of five. They are the oldest and most used human cell line in scientific research and have contributed to countless scientific studies since their discovery in 1951.

Lacks was a patient at Johns Hopkins Hospital, Baltimore, Maryland in 1951, being treated for a very aggressive form of cervical cancer. Several months before her death, a sample of her tumour was given to George Gey, the head of tissue culture research at Hopkins at the time. Gey had been searching for an immortal human cell line to study cancer with for two decades and he had finally struck gold: Lacks’ cells multiplied faster than any cells he had ever seen, reproducing an entire generation every 24 hours. Unfortunately, it was this rapid and unlimited division that caused Lacks’ cancer to metastasise to virtually every organ in her body within months. She passed away on October 4, 1951.

The dicey bioethics of HeLa cells

It is quite difficult to put into words just how impactful Henrietta’s cells have been on medical research. They were used to develop the polio vaccine, study leukaemia, AIDS, and cancer, and more recently, help develop COVID-19 vaccines. Since their isolation, HeLa cells have been used in more than 70,000 scientific studies around the world as of 2022. There is a darker side to this story, however.

After her passing, Henrietta Lacks was buried in an unmarked across from her family’s tobacco farm in Virginia. For the next twenty-odd years, her family had no clue her cells had been shipped worldwide and were being used pioneering medical research. It wasn’t until 1975 that the Lacks family even were made aware about the widespread use of her cells in said research.

Henrietta’s cells were taken without her consent, which was legal at the time. Since then, policy changes have been made, and ethical guidelines for medical research have been put in place like the Declaration of Helsinki, which places emphasis on the informed consent of patients. In the USA, changes are being attempted to be made to the Common Rule, the set of ethical policies for research with human subjects, to make its consent rules more far-reaching.

Racism in science and Henrietta’s legacy

In my opinion, what Lacks’ story really highlights is the racism that has historically plagued science, particularly medical research and services in the United States. Hopkins, where she was treated, was one of the few American hospitals at the time that would admit black people. None of the multiple biotechnology companies whose research benefitted from her cells have financially compensated her family. In the 1840s, James Marion Sims, known as the “father of modern gynaecology”, infamously conducted experimental gynaecological surgery on enslaved black women without anaesthesia. There was also the Tuskegee Syphilis Study, when hundreds of black men in the 1930s were denied treatment for syphilis by researchers so the progression of their symptoms could be studied. I have linked further reading on both cases and more general scientific racism at the end of this blog.

While it is important to reflect on these past injustices, what the Lacks family would like to shift the focus is to is the legacy of Henrietta herself. In 2010, the Henrietta Lacks Foundation was established by Rebecca Skloot, the author of a book about Lacks, which awards grants to her descendants and other family members of people whose bodies were used without consent in research. In 2020, on her centennial year, the Lacks family started the #HELA100 initiative to celebrate her life and legacy.

Henrietta loved to dance and cook. She dressed stylishly and wore red nail polish. And most importantly, in the words of her grandson: “[Her cells] were taken in a bad way but they are doing good for the world.”

Henrietta Lacks (HeLa): The Mother of Modern Medicine by Kadir Nelson is a portrait of Lacks which has been on view in the Smithsonian Institute’s National Portrait Gallery in Washington D.C. since 2018.

My thoughts

I wanted to write about Henrietta Lacks for my blog post because as someone who wishes to work in biomedical research in the future, I will probably end up working with these cells myself and I think it is important to highlight the legacy of these cells: both the unjust way in which they were acquired, and what we and the scientific community at large can learn from these past injustices so we do not repeat them.

As a woman of colour myself, I have rather mixed feelings on HeLa cells. It is chilling thinking about the horrific treatment people of colour, and especially women of colour have faced in historical medical research. However, HeLa cells have done so much good for the world and do so for all ethnicities. As long as we acknowledge the story of Henrietta and continue to compensate her descendants, I think HeLa cells can continued to be used in research.

Much progress has been made on bioethics and informed consent in medical research and treatment since that extraction was made from Henrietta’s tumour all the way back in 1951. However, as biotechnology continues to advance and gene editing and the like becomes more commonplace, the door has opened to once again start having these important discussions on how to ethically apply these new technologies.

References

Johns Hopkins Medicine (2023) The Importance of HeLa Cells, Johns Hopkins Medicine. The Johns Hopkins University, The Johns Hopkins Hospital, and The Johns Hopkins Health System Corporation. Available at: https://www.hopkinsmedicine.org/henriettalacks/importance-of-hela-cells.html (Accessed: March 8, 2023).

Martinez, I. (2022) What are HeLa cells? A cancer biologist explains, The Conversation. The Conversation Trust. Available at: https://theconversation.com/what-are-hela-cells-a-cancer-biologist-explains-169913 (Accessed: March 8, 2023).

Nature (2020) Henrietta Lacks: Science must right a historical wrong, Nature. Springer Nature. Available at: https://www.nature.com/articles/d41586-020-02494-z (Accessed: March 8, 2023).

Skloot, R. (2000) Henrietta’s Dance, Johns Hopkins Magazine. Johns Hopkins University. Available at: https://pages.jh.edu/jhumag/0400web/01.html (Accessed: March 8, 2023).

More Reading

Racism in science

James Marion Sims’ experiments on enslaved women

The Tuskegee Syphilis Experiment

The Immortal Life of Henrietta Lacks by Rebecca Skloot is a great non-fiction book about Lacks and HeLa cells, and goes into great detail on the ethical issues of race and class in medical research. There is also a film adaptation of the same name that can be watched on HBO and HBO Max.

slay

i am writing this hungover how am i supposed to live laugh love in these conditions

cafe parfait is kinda mid ngl

anyway, this module seemed interesting, which is why i picked it! i do biomed and this seemed like a really interesting extension of the content i’m currently learning

did you guys know there’s a protein named after sonic the hedgehog? that’s pretty cool

the sonic hedgehog protein is a signalling molecule that helps regulate embryonic morphogenesis in all animals

a bit about me: i like tennis, reading and music, mostly indie. i’m currently trying to listen to all of radiohead’s discography in chronological order; i’m up to a moon shaped pool

cheese.

i’m realising this post is just non sequitur after non sequitur i’m sorry lmao