Bsuc42 Tasha Stubbs-Davies
North Wales Coast Pioneer
Science Special
Money makes the world go round… but the future of medical research is in your hands…
The case of Henrietta Lacks and the issue of ‘ownership’ of tissue removed during surgery, has been the subject of debate amongst human rights groups, patient advocates and medical researchers this week following the UK release of the book The Immortal Life of Henrietta Lacks’, by science author Rebecca Stott. So what does happen to our tissue post-surgery? Is it our right to deny consent for the use of our tissues for research on the grounds of a lack of remuneration, or is it in fact our responsibility to provide such consent, for the advancement of medical science which benefits us all? Tasha Stubbs-Davies investigates…
Henrietta Lacks of Baltimore, Maryland, USA was 31 when she died from cervical cancer. However this was not the end of this young woman’s tale. Henrietta was immortalised when Dr George Gey, a researcher at John Hopkins Hospital, pioneered a technique to grow human cells in the laboratory. Since then, the cells, which became known as HeLa cells, have been used in research internationally, for genetic studies and gene mapping, AIDS research, the effects of radiation and toxins, polio and flu vaccine formulation, manufacture of drugs, in vitro fertilization techniques and many, many cancer studies, with new studies commencing daily. In fact Rebecca Stott states that HeLa cells have been named in more than 60,000 journal articles, and upwards of 50 million tonnes of Henrietta’s cells have been grown since her death (see Box 1, The Science).
This plentiful supply of cells capable of aggressive growth gave rise to a whole new branch of medical science and biotechnology and has provided pharmaceutical companies with massive profits, while the Lack family suffer financial hardship, and Henrietta’s son was quoted: “If our mother is so important to science, why can’t we afford medical insurance?” The case of Henrietta Lacks was used in court proceedings when John Moore tried to gain a share in profits when his own cell line was developed and commercialized following his treatment at UCLA Medical Centre in California for hairy cell leukaemia. In the case of Moore v Regents of the University of California, the Supreme Court made the landmark judgement that Moore was “not entitled to a share in any profits realized from the commercialization of anything developed from his discarded body parts.”
Box 1. The Science
How did HeLa cells (the original tumour made up of them) come about? Tumours of the kind that killed Henrietta Lacks are caused by Human Papillomavirus 18 (HPV18). The virus is passed, during intercourse into the cervix of the host, where it transfers its own genetic material into cells lining the cervix. This known as horizontal genetic transfer. When the genes of the virus were incorporated into Henrietta’s own genes, the HeLa genome was created. This genome is different from the genome of either parent genome (that of Henrietta or the virus) in several ways, most notably because it has 82 chromosomes (the discreet arrangement of DNA within cells); humans have a total set of 46 chromosomes. Based on the ability of HeLa cells to replicate indefinitely and the vast differences between it and the human genome, a scientist, Leigh Van Valen has written a paper describing them as “an example of contempary creation of a new species, Helacyton Gartleri. His conclusion relies on three main points: · The incompatibility of HeLa chromosomes and that of humans or the papillomavirus. · The “ecological niche” of HeLa cells. · Their ability to proliferate well beyond the desire or intention of cultivators. Van Valen proposes that they belong to a new family, Helacytindae, and the genus Helacyton. This is known as a paraphyletic group, where the cells are no longer Homo Sapien (human) nor the papillomavirus and so they cannot be classified as either, but these are its closest ancestors. |
You may think that this is a shocking truth about greedy pharmaceutical companies. But consider this: is it morally right to essentially buy and sell human tissue? The black market trade in organs has been highlighted in the media many times, and to be paid for our tissues blatantly encourages this trade and puts vulnerable people in society at risk. Would Henrietta Lack deny Dr Gey permission to use her cells because there was no ready cash in it for her? It’s doubtful. Her children should be proud that their mother has changed the face of medical science and that her cells have helped to save millions of lives, all be it posthumously, instead of feeling resentful that they can’t share a profit from it. The truth is that research is a necessity for advancement in the diagnosis and treatment of diseases; individual governments have to rely on funding from the private sector to fund research in order to provide us with the best possible standard of healthcare and it is the private sector that develops products for our treatments and diagnoses.
Having said all of this, it is an irrefutable fact that legislation should be in place to protect our rights as patients; we have a right to know what will happen to our tissues and organs after surgical procedures, and to deny permission for any such uses. Here in the UK, The Human Tissue Act 2004 specifies what the requirements for tissue harvest are. It came about following the Alder Hey organ scandal, in which the organs of deceased children were retained without consent. The act states that “appropriate consent must be given for the retention of any relevant material which has come from the body of a deceased person.” This includes the use of tissues and organs for research, which is clearly defined in the act. It requires licenses for any organisation intending to publicly display human remains (for example BODIES-The Exhibition, which showcased preserved dissected human bodies). The act also allows for anonymous organ donation, and that the wishes of the deceased with regard to organ donation, takes precedence over that of relatives (although this is not an enforced regulation; a government report in 2006 concluded that doctors would not be willing to confront families in these circumstances).
So, we are safe from the body snatchers. Henrietta Lack was an ordinary lady with an incredible legacy and her contribution to modern medicine has been invaluable. The take home message here is that research holds the key to our collective future health, we can all contribute, even after death and perhaps we all should. For more information go to: http://www.organdonation.nhs.uk/ukt/default.jsp
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