Topic B Discussion: Genetic Data Privacy

Hey delegates! I was reading a little bit more about Genetic Data Privacy and the question of individual vs. group consent. I found this article I think you would find interesting. Feel free to give it a quick read, and I’ll also summarize its main points below.

  • Genetics has reached a point of 'textuality,' which means a genetic data profile can reveal highly unique information, specific to an individual. However, such individual data requires genetic data of related individuals, which poses questions about whether individualistic privacy can exist in a post-genomic age. 
  • This understanding of genetic data development and its implications for a "legally relevant social group" was first recognized by the EU's Article 29 Working Party in 2004. Despite this recognition, much of the EU's current data protection laws/regulations, including GDPR, emphasize consent-based approaches on an individual level. 
  • Historically, human rights have been considered group-based protections, as evidenced by the Teitgen Report which accompanied the European Convention of Human Rights following WWII. In the report, Article 8 mentions the "erosion of familial privacy used for racial and religious discrimination in totalitarian regimes." The authors argue that this sets a precedence for current human rights frameworks to adopt group-based language. 
  • The collection of genetic data is an infringement of privacy not only because it reveals an individual's sensitive characteristics but also because it allows familial relationships to be mapped. Rather than distinguishing separate privacy rights for both individual and group, a middle ground of 'relational' privacy can accommodate by recognizing that privacy decisions at an individual level infringe on the privacy of many others. 
  • Privacy violations can be analyzed in a legal context by the extent to which they affect the "web of relationships" an individual is in. This is similar to collective rights terms such as 'group welfare.'

I found this article interesting because of its analysis of Topic B, and thought it discussed important nuances in the language of genetic data privacy laws, and how genetic data is distinct from other forms of data. I also liked how the author added a historic perspective to show how governmental bodies can start to recognize 'relational' impacts of genetic data. 


This article raises an important question - practically speaking, where does one delineate the membership of a biological group? It is not an easy question to answer, and I would encourage you all to research the existing international frameworks and resolutions and dive deeper into this topic. I hope you found the article as interesting as I did, and would love to read anything you've found in the research process. 



Thanks, 

Tyler Lee 

Vice Chair of CSTD, BMUN 71




References

Genetic Data and the Right to Privacy: Towards a Relational Theory of Privacy?

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