Summing it all up

Well, no, not really.  If there is one lesson I am definitely taking away from Biopolitics then it is that it’s hard to actually ever really sum anything up.  At least not anything currently debated or up for debate or anything that involves any possible disagreement.  All we can do with the uncertainty of things in development and the promises associated with those things is attempt to keep up or to maintain a set of tools for keeping up.  But though we cannot be sure about what the shape of things will be tomorrow, I like the idea that that un-sureness—or as Fortun would put it: chiasma!—doesn’t mean we don’t have to do our due diligence; that we don’t have to wrestle with the various important issues involved in the life sciences.  Though now what we are dealing with seems to amount to promises built upon other promises—those promises necessitate planning and preparedness.  To plan means to discuss and to remain open to the possibilities of debate from every side of any issue that seems contingent upon these abundant promises and their abundant potential.  Potential that does not have positive implications for everyone involved.

The potential problems that seem to be necessary corollaries do have a fairly effective summation within the debate over consent.  The difficulties involved in attempting to ascertain what can actually be considered informed consent constitute a main source of contention in the current ethical debates revolving around research in the life sciences.  What does consent entail?  Can you be assumed to have consented?  Can an entire country?  Can we really account for all the potential uses our genetic material may be used for in the future?  In Iceland these issues ultimately resulted in the derailing of deCode’s initiative involving the database.  But before it even got that far there was a lot of discussion from a lot of different sources about Icelanders being guinea pigs and happy to be such.  it is more than a little disturbing that so few people questioned the implications of that belief.  When we presume that a group of people is fit for something without recourse to what they actually think and feel about the matter we are depriving them of their freedom of choice.  This has implications far beyond Iceland and we should be careful to pay attention to the goings on of the various actors within the various fields involved in issues of biopolitics.

Iceland and Isolation

Iceland is a part of the world.  If this seems like an incredibly obvious point of fact, well… that’s because it is.  But its obviousness is easily obscured and shunted aside if it doesn’t support the various implications of our actions.  Chapter twelve of Mike Fortun’s Promising Genomics discusses Iceland and the rest of the world and how they are connected and separate and how the connections and the separations are not as firm or as flimsy as one might like for the sake of consistency if for nothing else.  It is of a piece with the rest of the book in how it deals with what we know and what we think we know and how.  At this point I’ve grown used to Fortun’s chiasmic reasoning and its usefulness has been amply demonstrated. “IcelandXWorld” deals with where Iceland ends and the world begins—as usual, it isn’t as simple as that statement.

Fortun begins the chapter with an interesting and instructive bit of history and geopolitics regarding fishing rights and territorial waters.  Essentially to me it seemed to indicate that the idea of what Iceland was is not fixed.  Iceland is not just the land or the people it is also the fish and where those fish are located whether that is three miles off the coast or two hundred.  These expanding definitions are something that Iceland is willing to defend—the defenders in the Coast Guard even become national heroes in the defense of this new expanded definition of what constitutes Iceland.  So, through out , Iceland has established and defended carefully demarcated boundaries but the necessity of contestation and establishment implies a degree of interconnectivity that cannot be ignored.

Later on in the chapter Fortun makes this point clearer when he returns to a discussion of Icelandic music and where it can be said to come from: the music is not just a product of some strange interaction of the people with an “otherworldly” landscape—the idea of describing something that actually is a part of the earth as not belonging to it is just another attempt to exoticize—the oddness of which makes it somehow unique but an example of how influences cross every boundary.  Iceland is not isolated and otherworldly it is and has been part of a global community since before we used those two words to describe it.  Any argument predicated on implying otherwise is just trying to create fissures between perceptions of reality.

Promises

We have to gamble on promises.  That is a good summation of this first section.  It is interesting how Michael Fortun describes promises as never now; as always either already or about to.  Well, I guess it’s a quote… but it meshes well with the overall scheme of unclear directions and destinations represented by the chiasma.  Of course that’s why Fortun used it… or that is what I am going to assume.  It seems as though what he is implying is that the future is a set of promises we have made to ourselves and to each other.  How those promises will unfold is where the gambling comes in.  We build everything up on foundations of promising.  It is more than a little disconcerting to think about the implications of that idea.  But it is also wonderful; promising opens up possibilities and helps us to attain goals and accomplish maybe not what we set out to do—what we promised—but something more than what otherwise would have been.

I love the conclusion of this middle chapter.  Fortun’s description of exceeding and becoming more—more than what we can actually conceive or plan for or be prepared for.  “We happen our way into a future without our full understanding or control, and that is something for which we should rejoice and be glad.”  This is not to imply that we have no control at all, rather that we can examine these fissures: not just the ones Fortun writes about and examines in his book but all the chs that follow from them and more.  He calls for an interdisciplinary approach that I found convincing.  We should each utilize the tools at our disposal to experiment and to think on the possibilities and promises that surround us.

Contrast

I thought Shinya Yamanaka’s piece was a good example of the importance of the group dynamic in Japanese culture.  Yamanaka was always very careful to acknowledge how his success was derived from a team effort.  It was not about what he could accomplish on his own but rather what he and his team could accomplish together.  This is also indicated in how he mentions the team members he brought with him to his current position at Kyoto University.  The Japanese place greater emphasis on teams as opposed to individuals; success as a unit is always considered greater than individual achievement.  Yamanaka’s affirmation of this fact: always trumpeting the team effort and never specifically his own is very refreshing especially in light of how Kari Stefansson acts and is portrayed in Michael Fortun’s book.  I have no doubt of the accuracy of that portrayal since it is acomplished largely through Stefansson's own words and actions, and also in the various journalists’ articles on him.  Robert Kunzig, with his battle imagery, is especially guilty of aggrandizement.

As I said in my previous post,  Stefansson is constantly in the process of selling himself as if he is the primary reason his company runs and is or will be successful.   The scene in chapter six where, at the town hall meeting, a member of the crowd stands and asks for a vote of confidence in Kari just builds on this already prominent edifice.  I found the part where Fortun explains the town is part of the district that was represented by Kari’s father in Parliament very telling; how much of their actions that night is built simply on their fondness for Stefansson and his family connections?  Do they support his actions or do they just support him?  It is a little disturbing when so much attention is focused on the individual and not enough light is shone on his actions. 

Kari Stefansson

In chapter five of Promising Genomics Mike Fortun describes his  meeting with Kari Stefansson in terms of how much Stefansson is inextricably linked with deCode Genetics.  Fortun does not need to reconstruct the main event of this meeting because Stefansson gives them a presentation on his company that doesn’t deviate from its published intent in any way.  Representing that with the excerpt from the non-confidential corporate summary drives the point home.  It is difficult to separate the two entities: the fortunes of each are tied up in the other. 

I thought there were some interesting parallels that came out in this chapter with the earlier piece we read on the autobiographies written by three of the key leaders behind the Human Genome Project.  Fortun discusses one of them at length.  Craig Venter is similar to Kari Stefansson in many ways; they are cut from the same cloth.  Both are their companies.  They represent the driving force behind the ideas they are selling and it is hard to see how their enterprise could succeed without pushing and pulling everything forward.  Or at least that is how they seem to represent themselves and often how they seem to be represented.

Near the end of the chapter Fortun mentions how the clinical trial portion of the corporate summary was not getting as much notice as the rest of deCode’s goals; Stefansson replies that he did not write that part and so it is not as clear as the rest.  That struck me as symbolic of the whole relationship between Stefansson and deCode Genetics: he provides the clarity and he provides the direction.  Anything not of him or from him is lesser.  I can see how he became such a polarizing figure in the debate over the Health Sector Database and who should have access to it and for how long or even if it should exist in the form proposed.  Kari Stefansson does not seem like the type to appreciate arguments against his propositions.

Communitarianism

My first time through Daniel Callahan’s Individual Good and Common Good, I was struck by a comment he made in the analytical virtues section.  Callahan suggests that, “the social sciences provide a useful source of insight.”  I thought of what Sujatha Raman and Richard Tutton concluded in Life, Science, and Biopower: it seemed to me that their summation was that Paul Rabinow and Nikolas Rose had over-simplified a much more complex issue or group of interwoven issues.  It gave me a little chuckle because I thought: here is Callahan the distinguished and authoritative scientific voice proclaiming that the social sciences can help provide an answer!  And then, over there, we have four social scientists disagreeing on the answer and two of them stating that there is no single easy answer!  It was a bit amusing until I realized that providing insight does not mean providing an answer to the currant debate over how bioethical concerns should be viewed and explored.  The insights provided by the social sciences help to frame the issues and to inform the debate.

One of the main points of Callahan’s article is that he feels the field of bioethics should be interdisciplinary.  “No one discipline, whatever its foundation, can claim a privileged place.”  I like this idea.  Having a firm ideological stance seems like it would trap you into a position where you would not be able to deal effectively with the innumerable potential benefits and detractions of all that is promised in genomics and the life sciences.  An interdisciplinary approach leaves you free to take the tools you need from whatever source is best equipped to deal with the nuances of that will arise as we move forward.  As Callahan describes it, communitarianism seems particularly well placed to provide a good starting point for the variety of interdisciplinary approaches that could be put into play.  The individual ramifications of applying new technologies are important to consider but far more important a question is what effect it will have on the larger population.

Autobiographies

The article Understanding the Human Genome Project: a biographical approach by Hub Zwart (who has an awesome name)describes the recent autobiographies of three of the chief scientists involved in the human genome project.  It is because they were chief that they had the necessary visibility to be able to write autobiographies.  As Zwart puts it they represent, “the larger research communities they are involved in.”  In this sense, they are able to provide insights into how the whole process that was the Human Genome Project ran as a going concern.  They also represent an insider’s view of what is usually not seen by the public until it is presented as a finished project.  I thought this distinction between esoteric and exoteric communication presented in the article was an interesting one.  The process of actual scientific research is open to every qualified participant but the general public does not have the training or the interest to follow the complexities of that research and so there is exoteric communication—journalists writing, interviews and these autobiographies.  In analyzing the memoirs of John Sulston, Francis Collins and Craig Venter, Zwart is arguing that they provide some benefit in understanding the history of the events in which each author describes his part.  They provide a human element: “They reveal and bring into the open what tends to be forgotten or even consciously ‘repressed’ in more formal self-presentations of science and scientists.”  It is good to be reminded that this was a human effort and, as such, was full of all the drama that usually entails.  Zwart makes his argument well: there is much to be gained in looking at a more complete picture when trying to sum up the importance and the significance of the Human genome Project in particular and in all scientific endeavors in general.