Psychology

Psychological Issues of direct to Consumer Whole Genome Sequencing

Last month, I wrote a blog post about personal Genomics. It is a topic I've been getting more and more interested in. The other day, a friend tweeted about a discussion on LinkedIn, Would you have your genome sequenced?.

84% of the respondents said they would. The subsequent discussion hit a lot of issues, including how testing relates to various U.S. Federal acts like the Health Insurance Portability and Accountability Act (HIPAA), the Americans with Disabilities Act (ADA), and the Genetic Information Nondiscrimination Act (GINA).

One person posted a link to a blog post, Whole Genome Sequencing and Calculating Risk Tolerance. The blog post pointed to an article, Harvard Mapping My DNA Turns Scary as Threatening Gene Emerges. It was an article I concurrently found links to from a different discussion.

The author, through genetic testing, discovered he had a variant called JAK2, associated with rare, cancer-like, blood diseases. It is a great article and well worth the read. As the author explored the ramifications of finding out about genetic propensities to rare diseases, he noted

a 1999 study in the American Journal of Human Genetics found that about 1 percent of 4,527 people who were told they had the gene that causes Huntington’s disease, a progressive nervous system disorder, attempted or committed suicide, or were hospitalized for psychiatric reasons

Does knowing about certain risks, link that of Huntington's disease increase other risks, like that of attempting suicide? How should we, and particularly, how should genetic counsellors, deal with these shifting risks? Should genetic counsellors get get some training in psychology, or work with psychologists?

I'm not sure, but even after reading all of this, if there was affordable direct to consumer Whole Genome Sequencing available, I'd still go for it. But then again, I like to explore new technologies and innovations, partly in hope that my explorations might help others.

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Tracing a Musical Linguistic Virus in the Internet Age

The other day, I was listening to the radio and I heard something that has set me off in the search of a Musical Linguistic Virus. The idea comes from Neal Stephenson's novel, Snow Crash. In Snow Crash there is a bio linguistic virus which ends up getting spread via virtual worlds. It seems to be a pretty virulent science fiction virus, but it seems like the idea isn't really all that far from reality.

Ideas, snippets of music, and memes have been spread from one person to another for ages. Perhaps a good example is an ear worm. Even without the Internet, ear worms can spread quickly. For people my age, I could simply mention, "Lovin' You" by Minnie Riperton, and many of my friends would not be able to get the tune out of the head.

Yet perhaps musical linguistic viruses in the Internet Age are more complicated. It wasn't a simple ear worm that I heard on the radio that I haven't been able to get out of my head. Instead, the host of the radio show was talking with guests from a band. They talked about key musical influences, bands from the eighties, and reusing samples. Perhaps they are taking musical DNA from the eighties and mutating it into new ear worms or musical linguistic viruses.

They mentioned Brian Eno, so I started to listen to some of his ambient music series on Spotify. This is a new avenue where musical linguistic viruses can spread. A thought came to me listening to a radio show. I pursued the thought on Spotify by listening to the music. Spotify posted to my Facebook Timeline that I had listened to Brian Eno and friends commented on it.

Steven L Johnson said, "That's what I listen to when I want to nap. :-)".

I responded, "Well, I've had a LONG week, and I'm actually going to crash soon." In fact, I did head off to bed soon after that, but my mind continued to turn about this. How does music affect what we think? How much does it reflect the current culture? Can we culture jam spreading different musical linguistic viruses via the Internet?

Perhaps an interesting project would be to create word clouds of the lyrics to the 25 songs of each year and tracking how it has changed.

So, what are you listening to? Why are you listening to it? How is it changing you? Perhaps most importantly, can we change what we listen to and how we talk about it to change our country and our world?

Additional Random Thoughts on Google+

Yesterday morning, I finally managed to get into Google+ (although I still cannot run the Google+ android app). With that, I can now call myself an expert and pontificate with the best of them. There are several different topics that people are talking about in Google+. The biggest is how to use it. Some of the more experienced technology writers look down on this topic. They appear to have distain for self-reflection. Personally, I think these are the most important discussions.

First, I’ll draw an analogy. I remember when I got my first hybrid car. I had fun driving it around, just for the sake of getting to know what it could and couldn’t do. I would talk with friends about the pros and cons of the little display on the dashboard that showed how the hybrid system was working. I kept glancing at the display, and modifying my driving behavior to get the best benefit out of the car. I shared my ideas with others, and they gave me valuable insights as well.

That’s what is happening right now. To me, and it appears as if it is the case for others as well, the big idea is ‘circles’. Instead of adding friends or following people, until you get to an unmanageable mess, like has happened for many on Facebook and Twitter, you can add people to ‘circles’ and then interact with circles, instead of with everyone in the world.

This begs the question, how best to organize your circles. This gets to the limited field test of Google+. I’m going to guess that the people at Google don’t really understand what these circles might mean, so they are allowing people to play with them, so that we can all see what emerges as the best way of organizing circles.

My suggestion that Google might not really understand circles is based on a few different things. First, they suggest four circles, Friends, Family, Acquaintances, and Following. Other than family, which I only have one person in right now, who is waiting for an invite, I have not used these circles. They seem to me to be too old school. They show up at the top of the lists and cannot be removed. I have created a new circle called, Misc., as a nod to David Weinberger’s book Everything is Miscellaneous. I put everyone in Misc. Yeah, perhaps Misc and Following are the same. If I could rename Following to Misc, I might have stayed with it, but to me Misc, is more than just Following. There are people who are miscellaneous contacts that I may not especially be interested in ‘following’, at least in the way I follow people on Twitter. Instead, I want to keep them in my Misc. category as leads to people I might want to revisit at some point.

With that, I’ve started creating categories based on contexts that make sense to me. I’ve created categories for locations. New Haven, Connecticut, Texas, California, etc. These might not be where the people are from or currently reside. They are simply where I associate them as being from. This illustrates one of the things I wish Google+ circles had, which a lot of other people have talked about as well, circles of circles. If I add someone to the New Haven category, they should be part of the Connecticut category. Likewise, I have a Progressives category and a Politics category. For me, I’d like to have everyone I put in my progressives category in my politics category.

I’ve also created a Technology category, a Virtual Worlds category, and a Nonprofits category. I’d like to be able to do Boolean logic on this and see what my friends in nonprofit technology are saying. I also had the idea for some sort of ‘rules’ processing of circles, but I’ve forgotten how I thought that should work, so I’ll just leave that hanging for right now.

Others have written about how they think Google Plus' Circles System May Not be Sustainable. The illustration they use is of what happens when people change jobs. Like with the idea of putting people in a Friends circle, putting people in a Work circle may not make sense. However, I may set up a CHC circle when some of my current coworkers get invites. I may set up circles for other companies I’ve worked with in the past. I might even set up a meta-circle of people that I’ve worked with at some point. To use circles effectively, I believe you need to think out your relationships over time, and how they change. Yes, that will require updating information about some contacts at some points. Of course that reflects life as well. It is important to reflect changes in relationships.

All of that said, I want to think about some of the underlying concepts about circles for me. The first is Dunbar’s number. The idea of Dunbar’s number is that we can only really keep track of around 150 people within a given context. It is the way the mind is wired, Dunbar suggests, and is backed up by all kinds of research from the size of early tribes to even online behavior today. As a general rule, I want to keep my circles, which might be thought of as the tribes I belong to, as having less than 150 members. My Misc circle is already well above that, as would other circles that might be circles of circles. When a circle gets to have 150 members, it probably should be broken into subgroups.

This gets to another idea I’ve been interested in. While I am not well read on System Center Therapy and the work Yvonne Agazarian, she has written a lot about subgroups, and it would seem interesting to take her theories about subgroups and think about how they might apply to circles and circles of circles.

One thing you may notice. I really haven’t touched on the issue of privacy. For me, I like to share everything I write with everyone. I figure that once it is online, no matter what people say about privacy, it is really public. I do worry about spamming my friends and might find times when I want to share what I’m writing with a subset of people, but as a general rule, everything I write, I consider public.

However, this isn’t the case for others, particularly doctors and therapists. Some people I know set up different accounts, work accounts and personal accounts, or they use different systems different ways, i.e. Twitter for everything public, Facebook for everything personal, and LinkedIn for everything work related. Through the use of Circles, Google+ may be a good solution to various of these issues.

With that, let me return to the key part. Google+ is still in a ‘field test’. To me, that means that it should only really be used by people interested in exploring new ways to use it and how it could be used as a disruptive technology. I remember back in about 2007 going to advertising conferences where people dismissed Second Life and Twitter as having no potential. While I still believe there are interesting opportunities for virtual worlds, I question whether Linden Labs will allow that potential to be reached, so to me, the jury is still out on Second Life. However, Twitter seems to have established itself pretty well now.

I suspect anyone prognosticating about the future of Google+ is, hmm, I can’t think of a polite way to put it. Think about smoky orifices. If you are going to look at it as a replacement for Facebook or Twitter, there isn’t a lot there right now. However, it is still an evolving field test. The thing that will make it interesting, or not, to me seems to be if people can find new things to do with it. Like the cellphone or the copying machine, if you look at what they were expected to replace, they didn’t have great prospects. When you look at the new things people could do, it became a different story.

A side thought about this, I have to wonder how Google+ relates to The Google Grid in EPIC

Will people find something interesting, new and disruptive to do with Google+? We’ll see. To flatly say no, simply reflects the inability to think innovatively, and as an early field test, it is really only the innovators that ought to be in there.

My two cents for now.

Doing the Numbers: Dunbar, Klout, Peerindex, and Patient Panels

I’ve long been interested in Dunbar’s Number, an estimated maximum number of people that a person can maintain a stable relationship with. (See Neocortex size as a constraint on group size in primates. Put simply, our minds are only wired to be able to maintain relationships with around 150 people at a time.

Some people have suggested that sites like Twitter, where I currently follow about 2900 people and have over 3,350 followers, Facebook, where I am approaching 2000 friends, and even LinkedIn where I’m approaching 700 connections is a reason to rethink Dunbar’s number. Perhaps technology gives us the ability to maintain broader relationships than our neocortex permits.

However, a recent article, Validation of Dunbar's number in Twitter conversations explores the nature of twitter conversations.

We find that users can entertain a maximum of 100-200 stable relationships in support for Dunbar's prediction. The "economy of attention" is limited in the online world by cognitive and biological constraints as predicted by Dunbar's theory.

Basically, they analyze a mass of tweets and find that as the number of people a person is connected with on twitter, the number of people they regularly communicate with starts dropping off somewhere between when they reach 100 and 200 people. They conclude

In this paper we show that social networks did not change human social capabilities. We analyze a large dataset of Twitter conversations collected across six months involving millions of individuals to test the theoretical cognitive limit on the number of stable social relationships known as Dunbar's number. We found that even in the online world cognitive and biological constraints holds as predicted by Dunbar's theory limiting users social activities.

I think they are significantly overstating things. If anything, their paper shows that for a very large sample of uses of a particular social network the human behavior around conversations did not significantly change as the result of using the technology. The lack of observed change in a behavior in a specific time with a specific tool does not mean that capabilities haven’t or are not changing. It may well be that there is something about Dunbar’s number that is immutable, even with the use of technology. This paper just doesn’t show it.

As I thought about it, I also thought about things like Klout and PeerIndex; tools aimed to measure influence. Online influence varies greatly. This might be because online communications isn’t just conversational, but there is a broadcast element as well. If we are in fact limited by the number of people we can converse with, it is an interesting topic for people interested in social media, especially those focused on the value of conversations over broadcasts.

Another thought that I had was about how many patients a typical doctor sees during a year. Numbers that I read suggest that the best ‘patient panel’ for a primary care doctor is in the range of 1800-2000 patients, way past Dunbar’s number. Should our conversations on social media be more like a broadcast? An informal conversation? A Doctors’ Appointment?

What do you think?

Another Personal Update

It’s day. My mind is full of things to write about, but I’ve just gotten home and I don’t have the time or energy to write as much as I would like.

This evening, I went to the CHC Annual Meeting of the Nursing Staff. Hopefully, I will get some time at work tomorrow to write about it.

I also started playing with a new site, or at least new to me called Mood 24/7. It is a site where people can easily, via a text message, or a form on the website, self report how they are feeling on a scale of 1 to 10. You can share it with your doctor to see if you are depressed (or perhaps bipolar or manic-depressive). You can share it with friends.

It seems like there could be some really interesting information gathered and analyzed, if they set things up right, to track how the national mood, or perhaps the mood of various states. It could be interesting to track the mood of an organization, especially as it explores organizational change.

I don’t know how open they will be with aggregate data or if it makes sense to pursue some other system that will do the same thing and provide aggregate data, but the prospects are intriguing.

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