Can I see some ID?

Should there be a minimum age requirement for personal genome sequencing? If so, what age?

Or maybe that question is irrelevant — or only relevant for the next decade or two. Future generations might get sequenced at birth (or maybe even prior to birth via PGD). That might leave no individual choice about personal sequencing, in which case, maybe there will be regulations about the minimum age for disclosure of personal genomic data to individuals. 13? 18? 21? 30? What age?

Or maybe we’ll have gotten over the whole minimum age heuristic by then, which is really nothing more than an easy and often rather arbitrary means of removing a bunch of administrative headaches. Without an age minimum, there might be other minimum requirements. What might a person need to achieve in order to get access to their genomic data? Understand the risks of knowing their data? Know the difference between an intron and an exon? Be able to live without long-term care insurance?

The truth is that people won’t really need to look at their genomic data anyway. The A’s, T’s, G’s, and C’s are useless to an individual. After all, its the genomic interpretations that are important, not the data. Maybe the interpretations will be regulated instead.

One day we’ll be sending queries to our genome much like we send queries to Google. What is my risk of hereditary breast cancer? Which autosomal recessive disorders do I harbor? What age am I likely to go bald? Do I have a propensity for nicotine addiction? Which drugs will make me sick? Am I a descendant of Genghis Khan?

If interpretation is the key, then maybe we decide that some interpretations can only be asked by people over the age of 18 or 30. Or, more wisely, maybe we’ll choose criteria less arbitrary than age. What might these criteria be and how do they map to different types of queries?

It is important to consider whether genomic data or genomic interpretations can really be regulated. Does the future include an RIAA for genomes? DRMed genomic data?

I’ve got some thoughts of my own, but I really just wanted to throw this one out there to get you thinking.

Comments

3 Responses to “Can I see some ID?”

  1. Keith Robison on July 30th, 2007 11:42 am

    Even if some sort of regulatory environment such as you suggest is instituted, following immediately behind it would be a host of operators offering restriction-free access and analysis. Most of these would, unfortunately, undoubtedly be of the same scientific quality as the various ‘medical’ operators who periodically try to leave comments on my blog, but others would be motivated by honestly held libertarian objections to ‘nannying’ adults and others might be honest operators wishing to make money in more permissive locales.

    In short, I would expect to be spammed mercilessly for personalized genome analyses, know of some aging hippies running sequencers and have the option of flying to Tijuana to get my genome sequenced.

  2. jasonbobe on July 30th, 2007 11:46 am

    :)

  3. jasonbobe on July 30th, 2007 11:58 am

    I should note that I’m not necessarily advocating regulation. I think we often overestimate the ability of legislation/regulation to solve problems and underestimate the number of problems that legislation/regulation can create, GINA included.

    Protecting rogue genomic interpretation websites may actually be necessary to some degree if we want to protect our ability to get “anonymous” genomic interpretations, i.e. interpretations “off the record” so to speak.

    Your reference to “medical tourism” was not overlooked. This is another area to talk about some time.

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