The history of research ethics traces back to the World War II (WWII) in the 1940s, during which thousands of prisoners in concentration camps, including women and children, were tortured and killed by Japanese and Nazi doctors in the name of ‘medical experimentation’. Examples included extreme physiological testing such as ice water immersion to induce hypothermia, and vivisection without anaesthesia. (22,23)
While such physical brutalities have hopefully become a thing of the past, other kinds of exploitations emerged. Consider the following examples:
(Click on the respective headings)
TEXAS VAMPIRES
In 1998, a team of researchers from Baylor College, Texas wanted to locate the genes for an inherited heart disease that causes sudden death in young people. They targeted a remote community in Newfoundland, Canada in which the disease has a high prevalence due to generations of genetic isolation. The local people agreed to provide their blood samples as they had been longing for a genetic test for the disease. However, because of the rapidity with which these ‘helicopter geneticists’ descended into town, ushered the subjects through the consent procedures, drew the bloods and then disappeared, giving back no more than a thank you note, they were regarded as the infamous ‘Texas Vampires’.
After similar misbehaviour was reported by other communities, Baylor College banned the lead investigator of the study from conducting clinical research for five years and revoked his research funding. (24-28)
FACEBOOK EMOTION MANIPULATION STUDY
In 2014, Facebook was heavily criticised for conducting an experiment on almost 700,000 randomly-selected users without their knowledge. Over a one-week period, a linguistic software was used to alter the ratio of emotionally-positive and negative newsfeeds displayed to the users. The study found that subjects posted more positive status updates after reading more positive posts. The opposite was observed for subjects who saw more negative posts. This was against the prevailing notion that seeing other people’s happy expressions on social network makes you feel sad or lonely.
Critics argued that even though the experiment complied with Facebook’s data use policy, users bore the risk of psychological harm and should have been given the chance to opt out from the study. (29,30)
STEM CELL-ENGINEERED TRACHEA
‘British teenager Shauna Davison was given an experimental transplant in 2012, in the hope of prolonging her life. Her mother says she was told in advance about two patients who had survived a similar operation - but not about others who had died...’
(Quoted from: BBC News, 2019) (31)
Read the full article on BBC News “Shauna Davison: ‘I might have had her for a bit longer’” (2019) or watch this case covered on BBC Newsnight: (16-minute length) (32)
The basic principles of research ethics →
Berger RL. Nazi Science — The Dachau Hypothermia Experiments. New England Journal of Medicine. 1990 May 17;322(20):1435–40. Available from: https://doi.org/10.1056/NEJM199005173222006
Nie J-B. Japanese doctors’ experimentation in wartime China. The Lancet. 2002 Dec 1;360:s5–6. Available from: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)11797-1/abstract
Texas Vampires - Media transcript prepared by Media Q Inc. exclusively for NSERC [Internet]. Who Owns Life. Canadian Broadcasting Corporation (CBC) Ottawa; Available from: https://tcps2core.ca/files/module1/Texas_Vampires_media_transcription_EN.pdf
The Canadian Institutes of Health Research (CIHR) and Queen’s University at Kingston. Module 1: Core principles. In: TCPS 2: CORE (Course on Research Ethics) [Internet]. Government of Canada; Available from: https://tcps2core.ca/welcome
Ahmad Ferhaan, Li Duanxiang, Karibe Akihiko, Gonzalez Oscar, Tapscott Terry, Hill Rita, et al. Localization of a Gene Responsible for Arrhythmogenic Right Ventricular Dysplasia to Chromosome 3p23. Circulation. 1998 Dec 22;98(25):2791–5. Available from: https://www.ahajournals.org/doi/full/10.1161/01.CIR.98.25.2791
Mark Quinn. Research that slew the ‘Newfoundland curse’ wins Governor General’s Award | CBC News [Internet]. CBC News. 2018 [cited 2019 Apr 17]. Available from: https://www.cbc.ca/news/canada/newfoundland-labrador/heart-attack-gene-mutation-governor-general-1.4667570
CBC News. Newfoundland to regulate genetic research | CBC News [Internet]. CBC/Radio Canada. 2000 [cited 2018 Nov 26]. Available from: https://www.cbc.ca/news/technology/newfoundland-to-regulate-genetic-research-1.216031
Kramer ADI, Guillory JE, Hancock JT. Experimental evidence of massive-scale emotional contagion through social networks. PNAS. 2014 Jun 17;111(24):8788–90. Available from: http://www.pnas.org/content/111/24/8788
Facebook admits failings over study. 2014 Oct 3 [cited 2018 Dec 7]; Available from: https://www.bbc.com/news/technology-29475019
Shauna Davison: ‘I might have had her for a bit longer’. BBC News [Internet]. 2019 Feb 26 [cited 2019 Apr 11]; Available from: https://www.bbc.com/news/stories-47377818
BBC Newsnight. UK teen dies after stem cell windpipe transplant – BBC Newsnight investigates [Internet]. 2019. Available from: https://www.youtube.com/watch?v=tUfgvLN3vBg