Category Archives: Civic Development

What does the Hela genome agreement imply for consent and genome data usage?

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All opinions my own and do not necessarily reflect those of Novo Nordisk.

A fair amount of reporting (for example here, here and here) has gone into the recent news that the NIH and the descendants of Henrietta Lacks have reached an agreement about the conditions under which the genome sequence of the HeLa cell line will be shared.  The basic parameters are that researchers wanting access to the data will need to apply for permission, the application committee will include members of the Lacks family, any publications will acknowledge the contribution of the Henrietta Lacks, and future genome sequences will be submitted to dbGAP.

This is a generally welcome development, and in no small part due to the work of Rebecca Skloot.  Her book, The Immortal Life of Henrietta Lacks provided the impetus to the current developments by popularizing the story of Ms. Lacks and the cell line derived from her tissues.  However, this agreement also can be seen as a precedent of sorts, and the future implications for the ethics of consent, genetic information sharing and genomic research are unclear.

Whose genome is it, anyway?

In Pasco Phronesis, David Bruggeman penned a post on some of the possible implications.  He discusses one of the key elements of genetic consent that I generally haven’t seen elaborated on much in the current literature: familial consent and exposure.   To what extent do those who share part of a sequenced genome have a say in the granting and rescinding of consent for the usage of genetic information?   Continue reading →

More developments in autism prediction

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All opinions are my own and do not necessarily reflect those of Novo Nordisk

A recent publication about efforts to find early indicators for autism recently came out in the journal Brain and reports an intriguing observation about brain size.  The researchers sought to identify whether Magnetic Resonance Imaging (MRI) of the brains of infants and very young children could help to predict which children would go on to develop autism.  Like many pilot studies of this sort, the experiment was done simply by looking.  The researchers identified a cohort of newborn siblings of autistic children and also a control cohort without that risk factor and began taking MRI images of their brains at the age of between 6-9 months, and again at 12-15 months and 18-24 months.  Prior research has shown that having a sibling with autism greatly increases the probability that a child will also develop autism, so in this situation the expectation was that some of the sibling group would develop autism and researchers would retrospectively be able to look at the data collected during the study and identify MRI features that correlated with development of disease, should any exist.

The impetus behind this is that previous research has not shown any definitive behavioral clues in infants (6 months or younger) that predict the development of autism.  However, the earlier a child is diagnosed, the earlier behavioral interventions can be applied to help that child and his or her family cope with future challenges. Continue reading →

Pink mustaches, or, disruptive technologies meet the freeways of LA

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All opinions are my own and do not necessarily reflect those of Novo Nordisk.

A recent article in the New York Times described the rise of rideshare services in cities across the US.  One of the more visible is Lyft, whose trademark is a happy, pink, fuzzy mustache attached to the front grill of a car for ridesharing.  The article described the conflict that’s going on between established taxi companies and this new kind of service which generally costs less than a taxi and is largely reliant on smartphone apps to match riders with drivers.

Since I’ve been reading Clayton Christensen’s The Innovator’s Dilemma, I thought it would be fun to try and frame these new transportation options in terms of his theories on sustainable versus disruptive change.  I believe the disruptive technology in this case is the ubiquity of smartphones and apps for connecting customers and vendors in decentralized ways versus central dispatching.  I think the situation qualifies as an emerging example of an innovator’s dilemma in a couple of ways. Continue reading →

Girls, G.A.M.E.S., STEM and fun

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There’s a lot of serious work going into understanding fun.  And for good reason.  If a game is fun it can make a developer millions of dollars.  And if it’s not…  The element of fun is also the underlying concept behind the rise of gamification approaches in business.  You know that a concept has entered the mainstream when it gets satirized in Dilbert.   Companies are experimenting with adding game-like elements such as competition, leaderboards, interactive simulations, and other similar innovations to the workplace.  Since humans enjoy games and games act to engage peoples’ attention, the theory is game-like features (or outright games) will help companies be more efficient, train more effectively and even drive innovation.

And the key element is fun.  Something about the alchemy between the participants and the system has to work in the right way to trigger the sensation of pleasure and interest.  Without it, the leaderboard withers, participation lags (or worse, gets mandated which is a death knell for fun), and the investment doesn’t pay off.  There’s a nice post over at techcrunch (HT @geoffclapp) dissecting the concept of “hafta” versus “wanna,” which I think is one of they important elements underlying fun.

I’ve been thinking about this in the context of a recent initiative put forth by Northeastern University, in collaboration with the Institute for Systems Biology, the National Girls Collaborative Project, and others.  The very bold, very exciting goal is to build a large, public-private collaboration that will create games that interest girls in the science, technology, engineering and math fields (STEM), and that will increase the probability that girls continue into STEM careers.  That initiative, appropriately, is called Girls Advancing in Math, Engineering and Science (G.A.M.E.S.).

At this beginning stage, there are many clear challenges ahead and no one is denying that a lot of effort and coordination will have to take place for this to have a shot of working.  I attended their kickoff meeting and volunteered to be part of their researching efforts, because I’m interested in seeing how these games will be developed to try and make them appealing and fun for girls.  Already at the first meeting it was clear there will be some healthy debates about how to do that, whether girls really do get different kinds of fun from their games, and also how to prioritize fun versus more educational goals such as showing girls that research involves more failure than success and how that’s okay.

I expect it will be interesting. I expect to learn a lot about games and tools for measuring subjective information.  I hope others check it out and get involved.  It’ll be fun!  And if it isn’t we’ll want to figure out why, because that’s the kind of data this project really needs in order to be a success.

Coda:  For another take on the strange power/fascination of games, check out his New Yorker story about maybe the worst video game in the world–and how it’s led to over a million dollars in charity donations.  And yes, I realize this game is not in any way, shape or form, “fun.”

Fielding percentage for UK surgeons

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All opinions are my own and do not necessarily reflect those of Novo Nordisk.

Last week I posted on how our measurements of defense in baseball have become a lot more sophisticated, and how that gave me hope for the evaluation of innovation.  If baseball, one of the most tradition-bound of US sports can adopt to new metrics, surely business can too.

I was reminded of this with the publication of a recent article about the National Health Service (NHS) in the United Kingdom and their plan to publicize the surgical success rates of clinicians across their country.  Surgeons in eight different specialities will have their mortality rates for specific procedures, length of hospital stays post surgery, and other elements published in tables for anyone to access.  The first group to have this information released is vascular surgeons.

A fascinating aspect of how this is being done is that publication of one’s rates is voluntary, but if a surgeon chooses not to have his or her rates published, that surgeon will be named.  It’s not quite putting people into stocks in the public square, but it is definitely a form of public shaming meant to increase participation.

Nevertheless, six surgeons have opted out and been named.  Game theory might predict these are surgeons on the low end of the measured metrics, who are taking a calculated risk that the negatives associated with not publishing their rates are less than the negatives that would come with disclosure of their rates.  But that’s not the case.  The NHS has stated that none of these surgeons lie outside the normal range for the reported metrics.

Instead, these doctors are protesting that the metrics are not measuring the right things.   They suggest the metrics don’t take into account the subtleties involved in surgical cases, how procedure names alone don’t properly capture how difficult or easy a procedure might be for a given patient.  Are there comorbidities?  Is a patient in generally poor health?  Is a surgeon one who specializes in tricky, difficult cases which would therefore lead to a lower success rate even though the surgeon him or herself might be highly skilled and effective?  Could these metrics scare new surgeons away from performing more difficult procedures?

This echoes the debate about defense in baseball, and whether standard metrics such as fielding percentage are the best for measuring defensive ability, or if more elaborate measures better reflect reality.

Still, while I agree with the viewpoint that we should always try to improve metrics, I also think the NHS is doing the right thing.  I think in this case the proper analogy might be baseball defense back at the time before the invention of fielding percentage.  In the practice of medicine world-wide there is a surprising lack of information about measures like success rates and efficacy.  As Sir Bruce Keogh said to the BBC: “This has been done nowhere else in the world, and I think it represents a very significant step.”  To take another quote from the article, Professor Ben Bridgewater commented, “We’ve been collecting data on cardiac surgery since 1996 and we’ve been publishing it at individual surgeon level since 2005, and what we’ve seen associated with that is big improvements in quality: the mortality rates in cardiac surgery today are about a third of what they were ten years ago.” That which we don’t measure, we can’t improve.

In the US, that idea is becoming more prominent.  Recent articles in Time and the New York Times have highlighted how transparency is lacking in the United States healthcare system, and the Obama Administration’s emphasis on comparative effectiveness is another thrust in that direction.  What the NHS is doing is a great model and a great start, and I hope they continue to both make these aspects of healthcare more transparent and work to refine their metrics so that they accurately reflect the difficulty of practicing good medicine.