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In this case, a researcher named Frances aims to sequence the genomes of children with cancer to study the genetic basis of cancer. After sequencing their genomes, she wants to make the sequencing data available to other scientists by publishing it online. By doing so, she hopes that scientists will be able to use the data to make significant advances in pediatric cancer treatment.
There are a few identifiable issues of data acquisition, management, and dissemination in this case. For one, making the genome sequencing data accessible to many online poses the potential threat of reidentification. Reidentification is when data is linked back to who it came from and used to identify the source. Even if the childrens genomic sequencing data is de-identified when it is posted online, with the right resources and in the right hands, it can be re-identified. In an example provided by Kasperbauer and Schwarts, a person shared his genetic material with an ancestry database so that he could learn of his descent and his distant relatives (2020). He recalled agreeing for his genetic information to be used for research, as long as it was de-identified. The ancestry company deidentified his genetic data along with many others and then sold it to a mattress company. Even though the data was de-identified, the mattress company was able to compare it to another ancestry database that was not de-identified. The mattress company matched his DNA with another persons DNA who ended up being his cousin. His cousin had contributed his own genetic material as well as name and other identifying information to this second database. That eventually allowed the mattress company to find out exactly who the original person was and where he lived, and to send him marketing information for their mattresses based on the basis that he had a genetic risk for back injury.
This example demonstrates how even de-identified genetic data can be used to find out exactly who someone is. Therefore, if Frances the researcher sequenced the genomes of some pediatric cancer patients in this case and then shared that information online, it could certainly be used in a similar way to re-identify the participants.
The reidentification of the child participants could be harmful in many ways. As adults, information of their health status could reach their employers or insurance companies and lead to discrimination. This information could also be easily recovered by marketing companies leading the participants to be exploited commercially. Essentially, their health information could easily be found and used by the wrong people, and this could cause significant distress to the child participants in the future.
Nevertheless, despite the risk of reidentification, the use of the childrens genome sequences could be used by scientists to develop new treatments for cancer and benefit the greater good of humanity. Furthermore, many patients with rare diseases that have poor prognoses consider the risk of reidentification minor when compared to the potential of finding a cure that can help others with the same disease (Hansson et al., 2016). In this case, I think it is Francess responsibility to fully disclose the benefits and risks associated with obtaining and disemminating the childrens genetic information, including the potential for reidentification, to the parents. Upon doing that, it is up to the parents to decide it is worth it to them or not to let their kids contribute to science in this way.
References:
Hansson, M. G., Lochmüller, H., Riess, O., Schaefer, F., Orth, M., Rubinstein, Y., . . . Woods, S. (2016). The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics, 24(11), 1553-1558. doi:10.1038/ejhg.2016.52
Kasperbauer, T. J., & Schwartz, P. H. (2020). Genetic Data Arent So Special: Causes and
Implications of Reidentification. Hastings Center Report, 50(5), 30-39. doi:https://doi.org/10.1002/hast.1183
U.S. Department of Health & Human Services. (n.d.). Case One: Creating a Public Archive of
Sensitive Data. The Office of Research Integrity. https://ori.hhs.gov/case-one-creating-public-archive-sensitive-data
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