Texas Vampires

The Texas Vampires were a group of researchers from Baylor College of Medicine who in 1998 conducted a study on arrhythmogenic right ventricular dysplasia (ARVD) among the population of Grand Falls, Newfoundland and Labrador, Canada. The study team was led by Dr. Robert Roberts.[1]

Because of the settlement pattern and isolation of the province's population, Newfoundland has "big clusters" of certain genetic conditions, making it a focus of research in genetics. In 1998, one such "cluster" emerged in the community of Grand Falls, where a number of people were found to have ARVD and some died of the condition. A group of researchers from the Baylor College of Medicine arrived in Newfoundland to study the community.[2] The group collected blood samples from community members in order to test for a particular biomarker indicating a genetic predisposition to the condition. However, study participants voiced concerns about the way the study was conducted, suggesting that the informed consent process had been rushed or even skipped, or that potential participants had been made to feel they might die if they did not take part.[2][3] They also objected to not being given the results of the study: "the Baylor Research team should know who is at risk of those people they tested, of having the condition and those who do not...That information has not been made available to the families".[2] Because of these concerns and the speed at which the sampling took place – the team flew in, collected the blood samples, and then flew out again within days of arriving – the local people and the media began referring to the researchers as the Texas Vampires.[2]

The story became the topic of an extensive radio broadcast by the Canadian Broadcasting Corporation.[1] A Baylor official responded that "There can also be different interpretations of what is being said both by the research team and other family members. In many cases the concerns arise due to communications falling short during the entire process." She added that although "current regulations do not demand the release of information...we are planning on providing all of the genetic information that we have".[2] The team published an article in Circulation announcing the localization of the gene believed to be involved in ARVD.[4] Members of the group later published another paper relating a different gene to the condition.[5]

The actions of the Texas Vampires and the public outcry regarding the incident led to the development of Newfoundland's Health Research Ethics Authority, a review board "to evaluate the ethics of all genetic studies proposed for the province". The board is the arbiter of which study groups are permitted to collect genetic materials from Newfoundlanders, among other considerations in medical ethics.[6][7]

References

  1. 1 2 Wood, Shelley (21 November 2001). "Robert Roberts among three Baylor physicians suspended from clinical research for up to 5 years". Heartwire.
  2. 1 2 3 4 5 "Texas Vampires" (PDF). CBC. Retrieved 9 January 2014.
  3. ↑ Cummings, Lynn (1 October 2012). "Get on board with the research ethics review process". Canadian Nurse. 108 (8): 28&ndash, 33.
  4. ↑ Ahmad, F.; Li, D.; Karibe, A.; Gonzalez, O.; Tapscott, T.; Hill, R.; Weilbaecher, D.; Blackie, P.; Furey, M.; Gardner, M.; Bachinski, L. L.; Roberts, R. (22 December 1998). "Localization of a Gene Responsible for Arrhythmogenic Right Ventricular Dysplasia to Chromosome 3p23". Circulation. 98 (25): 2791–2795. doi:10.1161/01.CIR.98.25.2791.
  5. ↑ Li, D; Ahmad, F; Gardner, MJ; Weilbaecher, D; Hill, R; Karibe, A; Gonzalez, O; Tapscott, T; Sharratt, GP; Bachinski, LL; Roberts, R (January 2000). "The locus of a novel gene responsible for arrhythmogenic right-ventricular dysplasia characterized by early onset and high penetrance maps to chromosome 10p12-p14". American Journal of Human Genetics. 66 (1): 148&ndash, 56. doi:10.1086/302713. PMC 1288320. PMID 10631146.
  6. ↑ Longtin, R. (2 November 2004). "Canadian Province Seeks Control of Its Genes". JNCI Journal of the National Cancer Institute. 96 (21): 1567–1569. doi:10.1093/jnci/96.21.1567.
  7. ↑ "Health Research Ethics Authority". HREA. Retrieved 9 January 2014.
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