Managing the Boundaries of Gene Editing: The Role of Controversies

Blog post by Ella Harvey. See the video here for more information about the origins of the post. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License


CRISPR-Cas9 is a recently developed tool that allows scientists to make precise changes to the DNA sequence in living cells: genome editing, also known as gene editing. In the lab, researchers use CRISPR arrays to target specific sequences of DNA they would like to edit. “Cas9” refers to the enzyme that cuts the cell’s genome at that location. Then, the researchers use the cell’s own DNA repair machinery to introduce or delete bits of genetic material (see figure 1).1 This technology has become popular because of its relative efficiency, low cost, ease of use and potential to make edits at several sites in the genome in a single procedure.2 This system also opens up a whole new realm of medical possibilities, from correcting genetic defects to preventing and treating diseases.3

Figure 1: Guide to CRISPR-Cas9, produced by ‘J LEVIN W’. Reproduced under a Creative Commons Attribution-Share Alike 4.0 International license. Available online at:

Though CRISPR-Cas9 possesses massive medical potential, ethical controversy is likely if and when this technology is applied to human germ-line cells, in which much of this proposed medical work would take place. Unlike somatic gene therapy which only affects the recipient’s genome, changes to germ-line genetic material may be passed on to future generations.4 Thus, germ-line application of CRISPR-Cas9 connects the technology with long standing social, religious and historical controversies related to the question of who has the authority to make decisions about human evolution.5 Concerns include the creation of “designer babies” at the behest of parents using genome editing to select for desirable traits in their progeny.

Though the great majority of genome editing research does not take place in viable human germ-line cells, the controversy that a premature application of this technology in viable zygotes (fertilised eggs) would unleash threatens to destabilise the entire field by making the use of CRISPR-Cas9 taboo. Preventing these public controversies from emerging is important to all proponents of genome editing research, regardless of their research’s clinical or pre-clinical, somatic or germ-line setting, because societal and ethical debates may influence the direction of funding flows and shape national research agendas.5

In the following discussion, I show how leading gene editing scientists constructed a standardised methodology for the usage of CRISPR-Cas9 technology in germ-line cells through a 2017 National Academies of Science Report in an attempt to stabilise the gene editing research network following a shocking advance in 2015. Then, I show how this elite response to a 2018 experiment by He Jiankui took advantage of that controversy to cement these rules. Finally, I show how the rest of the scientific community fell into line in the controversy’s aftermath, demonstrating that the elites effectively stabilised the gene editing research network.


Construction of a Standardised Methodology for the Use of CRISPR-Cas9 Technology in Human Germ-Line Cells

The seeds of controversy surrounding the use of CRISPR-Cas9 technology to genetically alter human germ-line cells were planted in April 2015 when a Chinese team became the first to effect genetic changes in human embryos. In a paper published on April 18th in the Protein and Cell journal, Junjiu Huang and his colleagues at Sun Yat-Sen University described how they attempted to use the CRISPR-Cas9 system to edit the human beta-globin gene, the gene associated with the blood disorder beta thalassemia, in 86 human embryos. Huang’s team only used unviable zygotes in an attempt to achieve success without sparking controversy that would follow allowing the modified zygote to develop to term.6

This study was a monumental progression in human genetic modification research. However, it was also a frightening step towards shrouding well-intentioned gene editing research in controversy. As a result of these fears, an ad hoc group of scientists called for a global moratorium on human germ-line gene-editing in 2015 to allow themselves time to set up a new infrastructure to regulate the future use of CRISPR-Cas9 in viable human zygotes.3

The first International Summit on Human Gene Editing was called that December in Washington, D.C. to give the leaders of the gene editing research community a stage to publicly define the approved uses of CRISPR-Cas9 in viable human zygotes. This summit was co-hosted by the USA’s National Academy of Sciences and National Academy of Medicine, the Chinese Academy of Sciences and the UK’s Royal Society. Only the most respected voices in the human gene editing field were invited. The decisions produced by this group would set parameters for the future use of CRISPR-Cas9 in human germ-line cells. Therefore, through this conference, the power to police the the usage of this gene editing technology in the human germ-line was placed in the hands of international scientific research elites.7

The Summit’s conclusions were formalised in the 2017 National Academies of Science Report. According to the report, heritable germ-line editing can only be used in the absence of reasonable alternatives for the prevention of serious diseases on genes that have been convincingly demonstrated to cause or strongly predispose individuals to that disease or condition. Before a study, thorough pre-clinical trials must be performed to understand the risks and potential health benefits of the procedure. The health and safety of the research participants must receive rigorous oversight during and after the trial. The guidelines also emphasised the importance of practicing maximum transparency to allow oversight mechanisms to work and prevent the usage of human gene editing in inappropriate circumstances.8

With these guidelines as a framework, the gene editing research elites invited stricter government regulation of their field to prevent the premature application of the CRISPR-Cas9 technology to viable human germ-line cells that threatened to mire their pre-clinical gene editing research in controversy. Theoretically, if everyone abided by these rules, everyone would be able to work towards their individual objectives and contribute to the development of knowledge without infringing on the progress of other scientists.


The Breaking and Defending of the Boundary From Violators: The Case of He Jiankui

The boundaries set by the gene editing elites were put to the test when the Southern University of Science and Technology (in Shenzhen) scientist He Jiankui proudly announced through a self-published YouTube video on November 25th 2018,9 that he had created the world’s first genetically edited babies, using CRISPR-Cas9 to make twins resistant to their parent’s HIV.10

He would not receive the congratulatory response from the scientific community he expected because his methodology violated nearly every important tenet of the guidelines put forward in the 2017 National Academies of Science Report. First, on the most basic level, He’s goal to make the babies resistant to HIV, a treatable condition, did not meet the threshold of addressing a “serious, unmet medical need” that would justify embryo editing.11 Secondly, the secrecy surrounding He’s experiment violated the Report’s “maximum transparency” clause on several fronts. He had funded the experiment himself, which allowed him to perform the study largely in secret.10 Seemingly to keep his study under wraps, He stalled for months before listing the experiment on the official Chinese registry of clinical trials.11 Even after He announced Lulu and Nana’s birth, He did not provide peer-reviewed data about his research and methods.12 As a result, even the Southern University of Science and Technology was unaware of He’s study.10 Third, his decision to go ahead and implant an edited embryo regardless of the off-target genetic mutations he found in many zygotes, and the widely held view in the gene editing field that the CRISPR-Cas9 technology was not ready for clinical human application, indicated he did not fully understand the “kaleidoscope of unforeseeable health risks for the twins and their progeny” posed by his procedure.3

He Jiankui’s actions represented a bold public violation of the boundaries constructed by the gene editing research community elite but, it also provided the leading voices in the field with an opportunity to fortify these boundaries in their public rejection of He’s work at the Second International Human Genome Summit where he was scheduled to speak. This summit, that ran from 27-29th November 2018, brought together a wide range of human gene-editing stakeholders including researchers, ethicists, policymakers, patient groups and representatives from science and medical academies and organisations worldwide.7 Thus, the conference presented the gene-editing elites with a perfect audience to demonstrate their commitment to policing the boundaries of the legitimate usage of CRISPR-Cas9 technology in human germ-line cells.

From the transcript of He’s session at the Summit, it is clear the conversation’s moderators, Robin Lovell-Badge and Matt Proteus, acted to represented the interests of the gene-editing elites by using leading questions to communicate that He’s trespassing of the boundaries set forth in the 2017 Report made his results illegitimate in the eyes of the field’s leading figures. He Jiankui was the final speaker of five in the “Human Embryo Editing” section of the Summit. Originally, the five speakers were meant share a single Q&A session following their presentations.13 However, after He’s bombshell announcement just two days before the conference, the Summit’s organisers altered the schedule so that He would have a separate Q&A session to allow the moderators and audience members a chance to fully engage with the biophysicist in his first (and only) public talk about his experiment.14

Figure 2 – He Jiankui speaking at the Second International Human Genome Summit, November 2018. Public domain image taken from:,_Hong_Kong.png

In front of more than 160 press representatives squeezed into one section of the auditorium, it would be up to the conference’s moderators to condemn He’s actions, absolve the human gene editing research leaders of blame and defend the boundaries of the 2017 Report’s regulatory framework. After He’s slide presentation of his data, he took a seat in centre stage for, essentially, a targeted interrogation by Lovell-Badge and Proteus that highlighted how He’s methods violated the approved methodology for human genome editing research at every step, thinly veiled as a polite “panel discussion.”15 For example, the moderator asked, “Why did you choose CCR5 when there are established ways of avoiding HIV transmission during conception?” Here, the moderator’s confrontational tone communicates the gene-editing elites’ rejection of He’s transgression of the 2017 Report’s “absence of reasonable alternatives” clause. The moderator went on to ask “Why did you ignore the salient view of the scientific community that treatment would be premature and irresponsible without a consensus on its acceptability?”16 In this way, the moderator served to erect the standard methodology as a boundary between He and the rest of the rule-abiding scientific community, attempting to prevent their own legitimate uses of the CRISPR-CAs9 technology from being tainted by He’s reckless application.

To the rest of the gene-editing research community, He’s public rejection by the gene-editing elites served as a warning. Any other researcher that dares to cross the boundaries constructed by the 2017 Report can expect to meet the same fate as He: a loss of legitimacy in the eyes of the field’s elites that hold great sway in the discourse and thus, the funding flows surrounding gene-editing research.


Acceptance of Boundaries: Responses to He Jiankui’s Work

A new level of international recognition of the boundary constructed in the 2017 Report following the Second International Human Genome Summit was demonstrated by the wide range of gene-editing researchers that hurried to release their own critical statements on He’s work in the days following the conference to prove that they fell on the right side of the boundary. This dynamic was especially salient in research institutions that He implicated in supporting his 2018 experiment. For example, He claimed that Michael Deem, a professor of biochemical engineering at Rice University, knew about the project. Rice University was quick to proclaim that it had no knowledge of He’s work and that it had launched a “full investigation” into Professor Deem.3 The Southern University of Science and Technology also stated that they were unaware of the project and had launched their own investigation into He’s lab.17


Concluding Remarks

From this discussion, we learn that sometimes controversy is necessary for the establishment of stability. He Jiankui’s use of CRISPR-Cas9 to produce two genetically-edited babies may have been exactly what the gene editing elite were trying to avoid through the standard methodology set forth in the 2017 National Academies of Science Report. However, Lulu and Nana’s existence demonstrates that these rules were toothless before He Jiankui’s strategic ostracism on the world stage by the powerful gene editing elites. Instead of allowing public perception to indict the entire CRISPR-Cas9-wielding network with unethical behavior, the elites took the controversy by the reigns. It was a textbook execution of Thomas Gieryn’s theory of boundary work in which scientists attempting to establish intellectual authority in a field dole out scientific legitimacy to those that abide by their constructed boundary and mark those who do not as “outsiders.”18 Only after He’s interrogation on the world stage at the Second International Human Genome Summit illustrated the consequences of trespassing the boundary set forth in the 2017 Report did the international gene editing network finally recognise the authority of the elite’s rule of law.



  1. “What are Genome Editing and CRISPR-Cas9?”
  2. “Editing human embryos ‘morally permissible’”
  3. Shanley Pierce, “Scientific experts respond to Chinese scientist’s claims of creating world’s first gene-edited babies”
  4. Nikolas H. Evitt et al., “Human Germline CRISPR-Cas Modification: Toward a Regulatory Framework”, The American Journal of Bioethics.
  5. Barbara Prainsack et al., “Stem Cell Controversies 1998-2008: Controversies and Silences”, Science as Culture.
  6. Jocelyn Kaiser and Dennis Normile, “Embryo engineering study splits scientific community”
  7. National Academies of Sciences, Engineering and Medicine, “International Summit on Human Gene Engineering”
  8. National Academy of Sciences and National Academy of Medicine, “Human Genome Editing Science, Ethics, and Governance: Report Highlights” 
  9. He Jiankui’s YouTube announcement:
  10. “He Jiankui: China condemns ‘baby gene editing’ scientist”
  11. Sharon Begley and Andrew Joseph, “The CRISPR shocker: How genome-editing scientist He Jiankui rose from obscurity to stun the world”
  12. Lisa M. Krieger, “Scientist at center of gene-editing controversy worked at Stanford”
  15. A recording of He Jiankui’s session at the Summit can be reached at this link:
  16. Peter Mills, editor, “What He Said”, Nuffield Council on Bioethics.
  17. Michelle Roberts, “China baby gene editing claim ‘dubious’”
  18. Thomas F. Gieryn, “Boundary-Work and the Demarcation of Science from Non-Science: Strains and Interests in Professional Ideologies of Scientists”, American Sociological Review.

Genetic results – to know, or not to know?

Blog post by Shona Kerr, Project Manager of the Quantitative Traits in Health and Disease group at the MRC Human Genetics Unit, University of Edinburgh. She is also Associate Director of the Edinburgh Clinical Research Facility Genetics Core.

Ever since the hype associated with the announcement of the completion of the Human Genome Project in 2003, a “genomics revolution” in healthcare has been promised. Following a decade or so in which evidence of benefits in mainstream medicine has remained elusive, in the past couple of years the speciality of “genomic medicine” has increasingly lived up to the promises made. This is due to a range of factors coming together in a way that is of enormous economic, cultural and societal importance. Chief amongst these are the implementation of efforts (with significant public funding) in many locations worldwide to embed genomics in healthcare systems, exemplified by Geisinger MyCode. They also include the increased availability (and sharing) of research and clinical genomic data internationally, as championed by the Global Alliance for Genomics and Health (GA4GH). Finally, data on millions of members of the general population has been generated by direct-to-consumer genetic testing companies such as 23andMe and


Consumer genetic testing kit from 23andme. Image by Hanno Böck, reproduced from original source under Creative Commons licence.

Continue reading

Genome editing – obstacles emerge?

Post by James Lowe, who leads the pig strand as part of the TRANSGENE: Medical Translation in the History of Modern Genomics project. His research into the pig genome project is funded by a European Research Council Horizon 2020 Programme Starting Grant. See the TRANSGENE website for more information on the project:​


Guide to CRISPR-Cas9, produced by ‘J LEVIN W’. Reproduced under a Creative Commons Attribution-Share Alike 4.0 International license. Available online at:

In the last month, two developments have potentially stymied the seeming promise of genome editing, the set of tools by which particular stretches of DNA can be selectively cut out of the genome. One was a research finding, the other a court judgement. Both cut across the seeming advantages that genome editing has over other methods of genetic manipulation, such as transgenics, the transfer of genes from one species to another.

Unlike transgenics and other examples of genetic modification where a gene or other sections of DNA are added to the recipient genome, the editing of DNA by tools such as the CRISPR-Cas9 complex were thought to be targeted and precise. When DNA is added by genetic modification techniques such as microinjection of DNA into the nucleus of the cell or using a viral vector to transport the desired addition, it is unknown where in the genome the added DNA will be inserted, and therefore the consequences of this addition are uncertain.

Last year, a paper was published contending that genome editing by CRISPR-Cas9 induced significant ‘off-target’ changes to the genome, alterations far beyond the site to which the editing activity was supposed to be focused. That publication suffered stinging critiques and was later retracted by the journal. The researchers who wrote the paper had not adequately accounted for the existing genetic variation between individuals in determining whether off-target changes had occurred. Off-target modifications are not the primary concern of people working with CRISPR-Cas9, however, not least because the tools to improve the targeting of the system and the means to detect off-target changes appear to be rapidly improving.

The problems instead relate to unwanted ‘on-target’ changes, and interference in the processes associated with p53, a protein involved in tumour-suppression. The on-target changes, according to research conducted at the Wellcome Sanger Institute, include deletions of thousands of base pairs of DNA and rearrangements of DNA.

Two groups (one in the USA, the other mainly Scandinavian) have also demonstrated that the double-stranded breaks initiated by CRISPR-Cas9 activate the p53 pathway, which acts to arrest cell division and may cause the cell to commit suicide. This is a sensible response to signs of DNA damage, as this tends to increase the risk of the cell becoming cancerous. In a developing organism, however, this process acts as an agent of selection, reducing the relative number of cells with an active, functioning p53 pathway that helps to suppress tumour-formation, while leaving cells in which mutations have made p53 inactive or malfunctioning free to divide and increase in relative proportions.¹

The implication is that genome editing can help generate organisms with a large pool of cells that have one of the main safeguards against the development of cancer missing.
The response to this has been sanguine, with calls for continued improvement of the tools and understanding of the processes of DNA repair. The Wellcome team highlight the crucial role of establishing what baseline normal variation exists between the genomes of different individuals, so that meaningful conclusions can be drawn from the development methods to detect unwanted alterations to the target genome.


The European Court of Justice, Luxembourg. Photograph by Cédric Puisney. Reproduced under a Creative Commons Attribution 2.0 Generic license. Available online at:

The court judgement has greater potential to limit the application of genome editing beyond the laboratory, at least in the European Union. Earlier this year, a formal opinion written by Michal Bobek, the Advocate General of the Court of Justice of the European Union suggested that products of genome editing would not need to be regulated in the same way as products of genetic modification. After all, genome editing was analogous to a mutation, and the products of it could potentially occur without human intervention. Genetic modification, on the other hand, involved the addition of a gene, a negligible possibility in nature.

In July, however, the court ruled that products of genome editing should indeed be deemed to be genetically modified organisms, and therefore governed under the strict provisions of the GMO Directive. While clarity on the regulatory status of genome editing may be welcome to scientists, the decision appears not to be, though there is a recognition by some advocates of genome editing such as Ottoline Leyser that the law itself is flawed, and that the judges were constrained by this. The implications of the judgement are still unclear. It may not affect laboratory research much, but in placing considerable regulatory obstacles in the way of applications of genome editing, it will likely influence whether the fruits of that research end up on our plates, at least in Europe.

Notes –

  1. On p53, see the general account of the history of research into this pathway by Sue Armstrong, ‘p53: The Gene that Cracked the Cancer Code

DNA sequencing: ‘a boring, thankless task’?

Post by James Lowe, who leads the pig strand as part of the TRANSGENE: Medical Translation in the History of Modern Genomics project. His research into the pig genome project is funded by a European Research Council Horizon 2020 Programme Starting Grant. See the TRANSGENE website for more information on the project:


An autoradiograph showing a DNA sample pattern. Royalty-free image from the MRC Laboratory of Molecular Biology.

When it was first developed, DNA sequencing was dirty, dangerous and extremely time-consuming. It was a long way from the modern image of speed, high-tech banks of sequencing machines, and researchers sitting at their desks managing and analysing the raging torrents of data funnelling into their computers: as dry as a dry lab can be. Its origins were in biochemistry. Biochemists try to extract minute fractions of important molecules from complex squishy organisms, and this involves a lot of mess, fluids and chemicals: as wet as a wet lab can be, perhaps. The very earliest methods were laborious and slow: for instance, sequencing just 24 bases (the building blocks of DNA) took Walter Gilbert and Allan Maxam 2 years from 1971 to 1973. At the time of writing, a whole human genome of about 3 billion bases can be sequenced in less than a day (although it is usually sequenced in a couple of months). The use of radioactive labellers in early techniques added some risk to the procedure as well.

It’s easy to see, therefore, why researchers for whom producing DNA sequences would be useful would want to get around the whole painful process of doing it themselves at a lab bench. This was not the case for everyone though: however painstaking a procedure might be, the execution of a mastered skill brings its own satisfaction and reward. The members of DNA sequencing pioneer Frederick Sanger’s laboratory in particular drew pleasure from this work.

As Miguel Garcia-Sancho points out in his book ‘Biology, Computing, and the History of Molecular Sequencing’, the tedium of sequencing by hand provided some motivation for the development of machines to do it in an ‘automated’ way. Of course, the potentially lucrative business opportunity was also a motivating factor.

Some of the researchers I have interviewed as part of my research into the pig genome project were delighted that those who had driven the sequencing of the pig genome had done so, but felt that the activity and discussion of sequencing was utterly boring to them. One compared the sequence to a tool; to paraphrase, if they wanted to tighten a nut, they just needed a good spanner, they didn’t need or care to know how it was made. The impression given by some researchers is that sequencing is just a service task, a lower-order activity not quite constituting ‘real science’.

Based on a 2001 article in Science published in the same issue as one of the papers heralding the completion of a draft of the human genome, a legend has developed that one of the driving forces behind genome mapping, Nobel Prize-winner Sydney Brenner, believed just that. This has been cited in support of the claim that Brenner indeed thought that sequencing was dull drudge-work.

Sydney Brenner, c. 1960s

Sydney Brenner, c. 1960s. Royalty-free image from the MRC Laboratory of Molecular Biology.

The author of the 2001 piece, Leslie Roberts, relayed supposed criticisms of the human genome project in its early days, reporting that for sceptics, “this was technology development, not experimental biology, and it would be mind-numbingly dull. Sydney Brenner of the MRC [Medical Research Council] facetiously suggested that project leaders parcel out the job to prisoners as punishment—the more heinous the crime, the bigger the chromosome they would have to decipher.” Brenner was not quoted, however, and no reference was given for this reported crack.

It is true that Brenner did not get involved in any of the human genome projects initiated in the late 1980s, and the quip certainly tallies with his puckish humour. Writing in 1990, however, Brenner actually stated that “I am not one who believes that mapping and sequencing the human genome is a boring, thankless task, suitable perhaps only for a penal colony where transgressing molecular biologists might serve sentences of up to 20 megabases. On the contrary, I think that it is the most important, the most interesting and the most challenging scientific project that we have, and that it will come to attract the best minds in scientific research” (Brenner, 1990, p. 6).

As an activity, DNA sequencing is not held in high esteem by all scientists. But the legend of Brenner’s attitude to it is quite the opposite to his actually expressed views.


Sources used in the text:

Continue reading

The HeLa Cell Controversy In The Genomics Era

Blog post by Robert Eppley. See the video here for more information about the origins of the post. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License


Road marker commemorating Henrietta Lacks. Photograph taken by ‘Emw’. Reproduced under a GNU Free Documentation License license. Available online at:

The HeLa cell line, established in late 1951, is the oldest immortal human cell line. For over 60 years, the HeLa cell lineage has been propagated countless times and played a critical role in the development of vaccines, such as the one to combat Polio. The circumstances under which these cells were obtained from their originator Henrietta Lacks, and the manner in which those cells were monetised, has become a well-known controversy. In this post, I explore how problematic use of the HeLa cells did not stop in the 1950s, but continued into the recent genomics era.

On 1st February, 1951, Henrietta Lacks reported to Johns Hopkins Gynecology Clinic and received a cervical cancer diagnosis. After a failed series of radiation therapy, Henrietta’s cancer spread rapidly and she was pronounced dead on 4th October, 1951. There is no evidence that Henrietta nor her family had knowingly consented to having her cervical cancer cells used for study. Despite this, her cells were collected from tissue samples in Dr. George O. Gey’s Johns Hopkins laboratory. Dr. Gey and his colleagues found Henrietta’s cells to be remarkably effective and efficient at rapid proliferation, and dubbed the cell line “HeLa” as a contraction of the name Henrietta Lacks.

At the time, the only other successful immortal cell line in existence was that of a mouse named L929, which had been successfully produced in 1943. Ironically though, Henrietta’s identity was not as well sustained alongside the cell line as the mouse’s had been, and her name was often mis-referenced to various pseudonyms like “Harriet Lane”. One philosophical scientific perspective posits that Henrietta “has achieved a kind of corporeal immortality through her eponymous cell line,” an immortality that supporters of the Lacks family might argue has allowed a scientific field to possess ownership over and reap benefits from a woman without her consent.

As of 2013, more than 74,000 laboratory studies had used HeLa cells in their procedures. Despite the lack of consent from Henrietta and her family, the Lacks family had, until 2013, received no control over the use of Henrietta’s cells nor major acknowledgment from either Johns Hopkins or any other major research institute that had aided in the commodification of Henrietta’s cervical cancer cells.

Indeed, though Henrietta had died in 1951, it was not until 22 years later – 1973 – that the Lacks family was even notified of the HeLa lineage. In this year, a lab group notified the Lacks family of the HeLa cell line while pursuing familial blood cells to investigate conserved genomic elements in the Lacks family. Following this contact, the Lacks family had trouble accessing more information about the use of their mother’s cervical cancer cells.


The European Molecular Biology Laboratory at Heidelberg. Photograph by ‘Albrecht62’, reproduced here under the Creative Commons Attribution-Share Alike 4.0 International license. Available online at:

A more recent event in the series of HeLa cell controversies came in 2013 when the European Molecular Biology Laboratory (EMBL) published the full genome sequence of the cells in full. The EMBL decision was ethically questionable in a number of ways. Because of the potential implications of a full genome analysis – the potential for it to harbour information indicative of unknown genetic predispositions, for example – the typical procedure for release is one which ensures consent on all parties that may be psychologically affected by the information.

As a result of the EMBL full genome analysis, the HeLa cell line was made more versatile as a component of lab research. Furthermore, the addition of this resource likely enhanced the quality of future HeLa-based research by uncovering previously unknown and abnormal factors about the cell line. In addition, the EMBL claims that the study ultimately highlights the vast number of differences that can be identified between a cell line and another given human reference. Perhaps the EMBL felt that the scientific importance of the study to the biological field was great enough to outweigh the potential deleterious effects it may have on the Lacks family.

Final closure of the public controversy came in the same year, when the United States National Institutes of Health (NIH) and the Lacks family reached a compromise, ultimately allowing the NIH to store the HeLa genome in a controlled-access database for researchers to use, rather than having open and public access to it.

The newer controversy of the sequencing of the DNA of HeLa has stimulated debate on the role of access to genomic data and privacy. However, the NIH has stressed that the agreement with the Lacks family and the solution adopted was tailored specifically to the sequence of the HeLa cells, and did not set a “precedent” beyond that. How privacy and openness is managed in genomics research involving human subjects is a matter that is far from closed.


Sources used:

Continue reading