Forum Recap: Use and Ownership of Genetics

On Tuesday, 12th February 2019, the Research for Change Forum held its fifth event of the 2018-2019 academic year, this time on the use and ownership of genetics! We greatly appreciated having Louise and Mel speak at the event about their research and motivations.

A little bit about our first speaker. It was Louise’s interest in IP law that inspired her to take up this research project. Louise’s research is an analysis of the obstacles faced by NGOs and Public Interest Groups to gene patenting. The case of Moore v Regents of California is central to Louise’s research: In this case, John Moore had a special condition that Doctor Gould treated, but Dr Gould also developed a treatment for leukaemia using Moore’s special DNA (found in the spleen) without his knowledge or consent. Doctor Gould went on the make millions of dollars from the treatment claiming patents for his“invention”. It prompted Louise to ask questions such as who owns our bodies? Are separated body parts still ours? How could Moore get a patent on DNA lines? The US Supreme Court found in favour of Dr Gould - that once the spleen was removed, Moore no longer owned it.

Gene patenting, as Louise explained, is a patent over an isolated section of a DNA which holds the information that decides anything from your eye colour to the likelihood of getting a genetic disease. A patent is universally understood to be a 20 year monopoly granted by the state over inventions that use these isolated DNA molecules. This means that for 20 years, no one else is allowed to use these DNA molecules - this includes using the DNA itself to a DNA-formulated product/process as a method of diagnosing patients. The problem with this is that large corporations tend to patent these specific genetic information and set high prices to anyone accessing their genetic tests. Louise gave the example of Myriad Genetics, an American molecular diagnostic company that patented the BRCA 1 and 2 mutations to DNA. If you have BRCA 1 and 2 mutations, it increases your risk of getting breast cancer. In this situation, patients were prevented from accessing these genetic tests because Myriad had monopolised usage of the DNA sequence and set exorbitant prices - up to $3000 dollars for a test. These high costs were not covered by insurance and so, low socioeconomic groups were excluded from these genetic tests.

Louise’s research focused on the public interest aspect of patent law. Her research questions how the patent system creates barriers and boundaries to hearing the public’s interest. In her findings, she found that public interests were often disregarded and that due to the closed networks, highly complex and highly technical nature of gene patenting, most gene patents can only be challenged if you have large financial resources and legal support - something a lot of people don’t have.

So what approach or methods has Louise adopted? Louise uses a hybrid version of Actor-network Theory, borrowing some key concepts from Science and Technology Studies. She explained that the “insiders” have significant success with these webs of influence, having resources, knowledge and experience to successfully enrol others to their principles, and creating networks of “deeper concentrations of power and dominance” over the national and international patent systems. Louise’s research complements these works by using the concept of “outsiders” and network theories to interrogate the obstacles faced by “outsiders” and provide an insight into how webs of influence can self-sustain and exclude outsider voices during the patent challenge process.

Moving on to our second speaker, Mel. Mel did her undergraduate and Masters in sociocultural theory; she is now in the midst of her PhD. Mel asks the question whether healthcare professionals owe a duty of care to the third party of genetic tests.

A recent case that is related to Mel’s research is the case of ABC v St George’s Healthcare NHS Foundation Trust. In this case, a father (“F”) shot and killed his wife and was later convicted of manslaughter. F was diagnosed with Huntington’s following the incident. Huntington’s is a brain disorder with symptoms such as depression, personality changes, memory lapses, etc. Huntington’s disease also has a significant impact as not only is it passed on genetically, but if you’re a carrier of Huntington’s and the disease does materialise, it will result in a painful death. This information is not disclosed to the daughter (“C”) who was pregnant at the time of F’s diagnosis. C is informed of F’s diagnosis ‘by accident’ and C was later diagnosed that she inherited her father’s condition. The genetic status of the child is unknown as of the time of handing down the judgement as only adults are allowed to be tested. C sued the UK hospital stating that they had a duty of care to share the father’s diagnosis with her, even against his wishes. The claim was struck out in the High Court and did not become a full trial; the judge, Mr Justice Nicol, was concerned that a legal duty of care to third parties would undermine trust and confidence in the doctor-patient relationship and that the duty of disclosing information to relatives would overly burden clinicians and therefore concluded that creating a duty of care in these situations would not be fair, just and reasonable. The Court of Appeal overturned the High Court’s decision to strike out the case, ruling that the claimant’s case was arguable and that C may be able to prove a duty of care owed. The case will now be heard in the High Court for a full trial on the facts and is set for trial this November 2019.

Mel approaches this issue from a sociological perspective. For Mel, it is not only important to understand the policy reasons behind what is fair just and reasonable, but it is also important to look at other aspects such as how we exist as human beings and what our genetics mean for us. She adopts an Ethnographic study to help understand how information moves through clinical services and conversations, exploring the power dynamics and contingencies within a clinical consultation. In doing so, she is also looking into the different models and processes of information sharing advocated by different professionals. Mel argues that autonomy and ownership of body as well as the voice and the right to advocate for oneself is of great importance, highlighting that patients are complex and different from one another.

The Research for Change Forum sincerely thanks Louise and Mel for speaking at our event and enlightening us on such thought provoking topics. If you found this interesting, come join us for future events! Our upcoming event is on ‘Computers and Law” and will be held on Tuesday 12th March 2019, 1-2pm in 3.33 WMB. Don’t forget to connect with us on Facebook/Twitter and we’ll see you soon!