Twittering Toilets and Phenomic Death Wishes

Unlike the first human genome sequence, which (rather mysteriously) we are able to “complete” every few years it seems, we may never be able to achieve a complete human phenome.

The totality of human physical traits, from the molecular to the behavioral levels, contains just too much information. There are many reasons why setting out to collect a complete human phenome is ill-advised, but even shrinking the goal to a much more manageable-sounding level like 0.01% of a human phenome will still face significant challenges, some economic, some technological, some social-ethical-legal-personal-and-everything-else.

The economic reasons are the most straightforward. Simply put, there are more data points in one human phenome than there are dollars to chase them. The technological reasons are slightly more interesting, boiling down to a lack of cheap tools for gathering good data. No doubt many of the major technological barriers to collecting a good human phenome will acquiesce to our geek prowess. As our technologies get “better, faster, cheaper” our phenomes will become more accessible and transparent. Our ability to collect information will rise, but so will our data quality standards.

Ten years ago, if we wanted to know how many poisons or toxins Bill Moyers had been exposed to over his life, the most technologically innovative and economically feasible solution might have been to ask him to respond to a questionnaire, something along these lines:

  1. Do you use sunscreen when you go to the beach?
  2. Have you ever suffered from carbon monoxide poisoning?
  3. Did you eat paint chips as a kid?
  4. Do you use pesticides on your lawn?
  5. How many times have you chemically permed your hair?
  6. How many times per month do you eat tuna fish?

Today if we want to learn about the environmental exposures Bill Moyer has experienced over his life — many of which he may have no way of knowing even if you asked him — we might supplement (or replace altogether) that questionnaire with a laboratory test on his blood, urine, hair, or other biological samples. In 2003, the “Human Toxome Project” did just that and apparently found quite a number of nasty substances inside Mr. Moyers:

billmoyerphenome

In many ways a “Personal Phenome Project” may only become remotely approachable as technologies become ubiquitous and passive. The keyword here I think is passive. Let the technology do the work, not me. You want to know how many hours of sleep I get per night on average? I would be more open to sharing a datastream from sensors in my bed than keeping a written journal. The latter takes work and I already work too much. Just check the datastream from my computer versus the one from my bed and you’ll understand what I mean.

The ability to turn off datastreams or redact their outputs will likely become the standard prerequisites for sharing. Just like with a questionnaire, which inherently provides me with control over my information by allowing me to skip questions or give dishonest answers, I would want to be able to control the datastream emanating from said bed.

One day your toilet will probably be able to twitter if you let it. Your iPhone may include an environmental monitoring system that continuously collects data on air quality or radiation levels. Your kitchen sink or a filling in your tooth might monitor and report on water quality. Function may give fashion a run for its money when earrings can monitor blood sugar, cholesterol, and stress.

The ethical-legal-social-personal reasons for the impossibility of a complete human phenome are the most interesting. Technology will make information infinitely cheap to collect compared to yesterday. But there will still be secrets and the need to keep them private. And that can be a very good thing. One of the first ten participants in the Personal Genome Project summed this up perfectly the other day when she said that she would much prefer her genome be publicly available than the contents of her personal email.

“Radical transparency” or “baring it all” in the name of scientific or medical discovery has its limits. I suspect that people will adopt “medical personas” that will be quite distinguishable from their other personas, both online and off, e.g. family, friends, professional, Second Life, Facebook, housemates, neighbors, strangers, Match.com, IRS.gov, etc. Each of these personas are in some way “identity silos” that would demonstrate a wide array of preferences for sharing sensitive information if they were compared. These silos serve their own purposes. Setting out to link them all together to gain a single omniscient view of “the data” sounds like a bad idea.

One topic I hope to explore more is the limits of transparency, especially as they relate to phenomes and medical personas. For example, I wonder whether some people might be open to donating sensitive parts of their phenome to science only after death. When I say “sensitive data” I mean traits or behaviors that may create shame or stigmatize people while alive, such as addiction, tobacco use, sexuality, STDs, illicit drug use, cosmetic neurology, psychological traits, etc.

A phenomic death wish does seem a little creepy at first (especially when its called a “phenomic death wish” rather than a final testament or a donation to science). In a similar vein, Thomas Goetz wondered the other day whether genomes are included in the deal when people donate organs to science. An interesting topic to explore more I think. Where there’s a will, there’s a way!

Comments

9 Responses to “Twittering Toilets and Phenomic Death Wishes”

  1. Berci Meskó on July 25th, 2007 2:10 am

    A great post again! I love your style of writing.

    We don’t need twittering toilets as I’d be very glad if most of the physicians would know what at least RSS means…

  2. jasonbobe on July 25th, 2007 3:23 am

    Thanks Berci! I had this whole Snow White and Seven Dwarfs angle I wanted to incorporate, but decided by that point I should probably just go to bed ;)

  3. Chris on July 25th, 2007 4:32 am

    Unlike the first human genome sequence, which (rather mysteriously) we are able to “complete” every few years

    The original unveiling of the human genome in 2000 was of a draft sequence, full of holes and mistakes, but a major milestone, nonetheless. Since then there has been numerous time and effort devoted to closing the gaps. (we’re on hg18 now, the 18th ‘version’ of the genome).

    Finishing a genome isn’t easy. As you get closer and closer to a ‘complete’ genomic sequence, it becomes almost exponentially harder to finish the rest. This is due in good part to repetitive regions in the genome that confound the assembly process.

    It would probably be possible to close every single gap given a huge amount of time and money, but frankly, the money is better spent elsewhere. This is especially true given that we now realize how much of the genome is variable between individuals.

    I suspect your comment was in jest, but I figured I’d put my two cents in anyway. Keep up the good work and I’ll keep reading.

  4. jasonbobe on July 25th, 2007 9:32 pm

    Hey Chris -

    Yes, the remark was in jest, but I do appreciate the comment. I didn’t realize that we were on the 18th release of the reference sequence. Good trivia.

    At the PGP we’ll be focusing on sequencing exomes for many of the reasons you described above. Much more economical.

    Jason

  5. Deepak on July 26th, 2007 2:04 pm

    Great post. The visions of Twittering toilets though just makes me think of Japanese hotel rooms and the number of buttons that toilets there have.

  6. Jason Bobe on July 26th, 2007 4:18 pm

    I like these toilets:

    Never used one of these, but similar concept:

  7. Pat Washburn, OrganizedWisdom.com on August 5th, 2007 3:37 pm

    Fantastic post! I’ve included it in the Medicine 2.0 Blog Carnival at The Health Wisdom Blog.

  8. jasonbobe on August 5th, 2007 11:02 pm

    Thanks!

  9. Trackbacks on April 29th, 2017 12:27 am

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