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Ethical Issues of the HeLa Cell Genome Sequence

Paper Type: Free Essay Subject: Sciences
Wordcount: 2606 words Published: 23rd Sep 2019

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AIP – Eukaryotic Cell Culture Assignment


In 2013 the genome sequence of the HeLa cell line was published. This generated a debate on the ethical and biomedical/scientific implications of making this information publicly available.

a) Discuss the ethical issues relating to the HeLa cell genome sequence being openly accessible. (50 points)

b) Discuss the biomedical/scientific benefits of the availability of the HeLa cell genome sequence. (50 points)


The HeLa cell was the first human cell line to be immortalised in 1951. Since then, 74,000 papers have been published based on HeLa [1] along with two Nobel prize winning studies in 2008 [2] and 2011 [3]. It is undeniable that Henrietta Lacks, the donor of the cervical cancer cells, has gifted the world with massive advancements in modern science. Though for all she has given us over the past 70 years, it is glaringly obvious how little the science community valued her consent, input and privacy. The history of HeLa is littered with ethical blackspots and wilful ignorance of best practice surrounding informed consent and data protection. The latest of these breaches of trust between the Lacks family and researchers occurred in 2013. The entire sequence of the HeLa genome was publicly published by German researchers at European Molecular Biology Laboratory (EMBL) [4] without so much as a phone call. Although the family later objected and removed the information, there was still little to be done to put the genie back in the bottle.

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This was not the first time personal information was taken from the Lacks family without their knowledge. The initial tumour cells were taken from Mrs Lacks during a biopsy performed by Dr Howard Jones at the oncology ward at Johns Hopkins Hospital in 1951 [5]. These cells were then passed on without permission to George Otto Gey, the researcher responsible for the first HeLa tissue culture. Twenty years later, the Journal of Obstetrics & Gynaecology identifies the source of the sample as Henrietta Lacks without contacting her family [6]. This paper gained traction in the press and word eventually travelled to her family in 1973 when they were finally told about the cells collected. Her children were also asked to provide blood samples to researchers, though it is unclear if they were aware of what the samples would be used for [5].

In 2012, Nature was preparing to publish the recently sequenced HeLa genome. Its reviewers had no ethical objections or concerns prior to its scheduled publishing. Strictly speaking, these reviewers did nothing legally wrong. Though ethicallyhere were no laws or guidelines that outlined how genomic data could be used or published. The Lacks family prevented the publishing and entered talks with the US National Institute of Health (USNIH) to discuss how to balance the scientific significance of  the sequence and the families right to privacy [7]. It was near impossible to completely prevent scientists & the public accessing this data and extrapolating the sequence from multiple pieces of genomic information being visible in many different studies. For this reason, the USNIH and the Lacks family came to the agreement that the genomic data would only be available on request by researchers at their discretion [7].

While this may have been an acceptable compromise for a cell line that has been so prolifically documented throughout the late 20th century, it sets a worrying standard for how genomic data should be treated in the future. Over the last decade, the popularity of genomic self-test kits has exploded. Requiring only a simple cheek swab a person’s genetic place of origin, distant family, potential allergies or disease predispositions can be found. But only in the last couple of years are we seeing the ethical implications of allowing private entities to sequence and store genetic information of a large proportion of individuals. There is arguably no information as personal as one’s DNA sequence. Despite claims that all data is “anonymised” by these companies, Dr Yaniv Erlich and his research group proved that by using lobSTR (computer program capable of identifying genetic markers and cross-referencing them against demographic information/genealogical databases) it was possible to identify a sample donor [8] using public records.

More worrying still is the lack of regulation surrounding the use of this data. In the US, legislation protecting DNA related data was written into law in the 1970’s with few attempts to modernise it being made [7]. Some customers might argue that they are comfortable with the terms of data storage/usage, given its low-cost and the vast amount of information it can supply, but it is concerning that large for-profit companies such as Ancestry.com and 23andMe have no official regulator and no real limits on who they can sell data to (including pharmaceutical and healthcare companies) or how long samples can be stored for. With millions of voluntarily provided samples, it is easy to see how valuable this data is and how it could be misused [9]. Of course, there are legal safeguards against discrimination based on a person’s genetics in the workplace and in health insurance coverage. Though surprisingly, this not the case with life/disability insurance [7].

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Genome sequencing with ancestry database cross-referencing has begun a new era in law enforcement. While some advantages have come from this new technique of running DNA found at crime scenes against genealogy databases (last year the Golden State Killer was apprehended using DNA from a rape kit and multiple consumer genealogy websites [10]), it also raises questions about privacy and informed consent. Notably this year FamilyTreeDNA disclosed that it had been allowing the Federal Bureau of Investigations to use its databanks (containing almost 2 million records) for violent crime investigations without informing its customers [11]. While some positives can be taken from this application, the willingness of these private companies to use or sell their customers most private, personal details is deeply concerning. These people were betrayed by a company they had put their trust in, the same way Mrs Lacks and her family were used and ignored by the scientific community. The Lacks family DNA were used to further the careers of many researchers who then profited off the work they based on HeLa. To this day, no financial compensation has ever been paid to any relative, though Johns Hopkins now has new research building named in her honour.


The HeLa cell line has been used as a model human cell line for decades. Their remarkably robust ability to thrive in continuous culture conditions made them a popular choice amongst researchers very early on. Before there was a way to artificially immortalize cell lines by expressing human telomerase reverse transcriptase (caused endless replication) [12], scientists had to rely on naturally immortal cells. This was far from ideal as few cells were even close to being as hardy as HeLa, which meant that the majority of researchers time was dedicated to merely keeping the cells alive as opposed to studying the effects experiments had on the cells. In fact, HeLa cells grow so well in vitro that they are notorious for contaminating and dominating other cell cultures [13]. HeLa has been a part of many of the major breakthroughs of modern science. Jonas Salk used them as a model in the development of the polio virus vaccination in 1954. The AIDS virus was isolated and characterised using HeLa in the 1980’s and more recently a definite link between Human Papilloma Virus (HPV) and cervical cancer has been established using HeLa.

 It is notable that HeLa is a cervical cancer cell line, meaning that cell line already has significant differences to a healthy human cell from the outset. The major difference between a healthy cell and a cancerous one is that cancerous cells do no go through a programmed cell death (apoptosis). HeLa cells can also have 76-80 chromosomes whereas healthy cells only ever have 46 [14]. HeLa is distinct from other cancerous cells as it has active telomerase during replication. This is important as in most other cancerous cells, DNA can be easily damaged during replication, producing two mutated daughter cells resulting in many replication cycles with the same corrupted DNA. Whereas in telomerase active cells, DNA is protected during replication by the addition of sequences to the end of chromosomes that prevent DNA corruption [15]. Apart from these fundamental reasons, HeLa has been dividing almost constantly for the last 70 years, undoubtedly accumulating countless mutations that could not be characterised without studying its entire genome.

 As personal and intimate as a person’s genomic sequence is, it would have been an unquestionable loss to science if HeLa had not been sequenced. Prior to 2013, the human genome was used as a reference in HeLa studies. That data was the product of the Human Genome Project that began in 1990 when the USNIH, the US Department of Energy and Craig Venter collaborated over a period of 13 years to provide a free open-access sequence, conducive to rapid medical advancement. This project lead to the discovery of almost 1800 disease-causing genes and numerous genetic testing methods [16]. As there is a heavy reliance on HeLa as a human model in numerous studies, it is incredibly important for the interpretation of the results that the HeLa genome is compared the human genome. Using the human genome as a reference for HeLa can be risky as the exact level of fidelity between the two cannot be certain. This leaves room for error and uncertainty in many integral studies.

After sequencing, it was found that HeLa had many genomic abnormalities. Some that would be expected of a cancerous cell line, others less so. It was found that HeLa had an unusual chromosomal number and structure with many regions having an abnormal gene order with many inserted and deleted elements (called “chromosome shattering”) [17]. There were also many incidences of multiple healthy copies of genes being deleted, a common characteristic of cancer cells. There were almost 4.5 million single nucleotide variants found on the genome with roughly half a million identified indels [12]. Most of these genome changes had been characterised in cancer cells before in the 1000 Genomes Project, though it is impossible to say which mutations caused HeLa’s specific phenotype [12].

One of the benefits the sequence afforded to the Lacks family is the discovery of how Henrietta’s cervical cancer became so exceptionally aggressive. In 2013, Dr Andrew Adey and a group of researchers from the University of Washington found that human papilloma virus had integrated into cervical cells which subsequently activated a cancer gene [1]. This resulted in the massive uncontrolled replication that took Mrs Lack’s life at the young age of 31. The research group stated that this seemed to be “the perfect storm” of viral insertions [18]. Tumour suppression was inhibited as two viral oncogenes had been inserted into the cell and thirty copies of a regulatory enhancer were inserted beside MYC, a proto-oncogene. By inserting beside MYC, the virus initiated transcriptional dysregulation [19] which lead to rampant cell division. Though this is a recent discovery, it is believed to be a common reason for aggressive phenotypes of many different cancers.


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  4. Coghlan A. German lab apologizes for publishing the genome of ‘immortal’ woman’s cell line. The Washington Post, 2013. https://www.washingtonpost.com/national/health-science/german-lab-apologizes-for-publishing-the-genome-of-immortal-womans-cell-line/2013/04/01/b33dead8-9874-11e2-97cd-3d8c1afe4f0f_story.html?noredirect=on&utm_term=.331fba248edc (2013).
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