due diligence

In class on Thursday our conversation rested heavily on the idea of due diligence brought to our attention by Mike Fortun. I am surprised SameXDifference didn’t appear earlier in the book. There were several mentions about the apparent homogeneity of the Icelandic people, thus making them great guinea pigs/research participants in the genomic undertaking of deCODE. Early on, I questioned this assumption, but assumed the scientists behind the deCODE project knew something about shared genetics that I, a social work major, didn’t know. Turns out, I knew more than I gave myself credit for.

I learned years ago that race is socially constructed, because biologically people of all color are more the same than we are different. Alternately, as a culture we have created race as a way of classifying differences in people. Having this line of thinking as my foundation, I quickly questioned the reasons deCODE made for researching Icelandic people. I then began to wonder what year the idea of socially constructed race began to be acknowledged. I did a quick Internet search and found that journals began to publish pieces on the topic in the early 1990’s- around the same time deCODE was getting started. Maybe the idea didn’t make its way from the social science to the hard sciences fast enough, giving good cause to the importance of interdisciplinary research.

In the case of deCODE, due diligence was not given to the previous research and resources about human genetic sameness. When deCODE began to make promises to investors and the public about the unique attributes of the Icelandic people, I am surprised more prominent people didn’t speak up about the ignorant claims being made. What took so long? Was it only when they went public that it became an open problem? Fortun shares that more new genomic firms are attempting to sell their products on account of heterogeneity. Due diligence must be given to this, much to the same tune of a previous entry I made about Fortun “calling us, the people, to be more careful, thoughtful, just and admirable while negotiating the new territory.” In sum, careful research is important before promises are given.

trivial morality

The term “boundary object” presented by Williams et. al. mimics some the discussion we saw in R. M Green’s discussion of embryos. Green notes that the embryo has become a symbol for those with religious reasons to prevent research. He points out that even President Bush, who passed legislation to prevent further embryonic stem cell research (ESC), dismisses the thousands of embryos that get destroyed during the IVF process. This inconsistency seems to be remedied by what scientists in Williams et. al. research claim as a primary goal of ESC: use spare embryos for research. As babies are made through IVF, they undergo pre-implantation genetic diagnosis (PGD). When genetic abnormalities are found, those embryos don’t get implanted. Since scientists want those embryos for research it seems to make sense to have less embryos “chucked in the bin” and more used for their potential to save life.

In lecture you said that often the most important lessons are found in the trivial things, and creating less waste embryos is an issue of practicality. I was thinking in order to get the embryos from the private IVF clinics to major research facilities they have to have a connection. I wonder how many IVF clinics have relationships with research facilities? It seems like the reason embryos are being created just for research (instead of using “leftovers”) is that it’s just easier. It’s a pragmatic issue, requiring teamwork to get separate facilities to share embryos.

The IVF/PGD world is separate from the hESC research world. The only link they have is the embryo, thus making it a boundary object, or bridge between the two worlds. But it’s not that easy. There still needs to be a reason for the two worlds to work together, and that could be seen as trivial to some, and a matter of morality to others.

The article on human embryos as “boundary objects” was a good reminder of the human-ness of lab scientists and emotional, real, and controversial work being done in biomedical science. I find it interesting that the science world is willing to consider the essence of an embryo. I spent many years believing that stem cell research was done by heartless lab scientists looking for ways to make money from the exploitation of life. Through the readings in this course I can now say that this issue isn’t taken lightly by either side of the issue.

Are we ready?

The language used near the end of Fortun’s PromisesXPromises chapter/chiasmus, intrigued me this week. He used beautiful language to express the essence of chiasmus and what it entails for us, the reader. We see a culmination of many unknowns in the genomic landscape become a command to the reader. Fortun asks us to become “fruitful and multiply in searching for new patterns and connections, forcing new articulations and crosses” (p. 112) in the conversation of genomic promises and potential. He comes to a place of accepting the many unknowns of the genomic field, even going so far as suggesting that we should “rejoice and be glad” in the things which are out of our understanding or control.

I think it makes sense that a person steeped in the social sciences would suggest such a broad ranged hands-in-the-air posturing for when promises become nothing more than speculations for the future. For the biologist, or “hard scientist,” I imagine the beauty of the unknown is less appealing and less poetic than Fortun’s outlook.

I noticed that Fortune is really asking us, the people, to be more careful, thoughtful, just and admirable while negotiating the new territory. I see this as a call to people everywhere to take responsibility both politically and socially. Many of these new technologies seek to change the world we live in, including some of the moral stances many hold, as Green so clearly pointed out in his research. Is this something we are ready for? If we explore the promises more closely and carefully, as Fortun ( and this class) ask us to, we may realize that we either are, or are not, ready for the race to conclude in the form of genetically altered children, medicine, and technology.

The moral issue is at the heart of much that is promised: children without genetically inherited disease, stem cell research, finding cures for disease. Fortun asks us to be engaged in the process after all, we the readers are a part of the actor-network that makes science so messy. And we, just like the Icelandic people have a right to ask questions and intelligently and carefully debate the race that is happening right below our noses!

EmbryoXLife

I have lived on both sides of the abortion debate. I have read countless books, from both a science perspective and a cultural/personal perspective. I protested in front of clinics that I later visited. I know how complex the issue is, and after all these years, I realize that the debate over embryonic personhood is nearly impossible to answer from a merely biological perspective, because just as our actor-network model shows: all of science (or life) is intertwined by complex feelings, beliefs and information. Robertson, in Assisting Reproduction, writes, “It has long been apparent that this problem is not resolved by rational argument” (p.1495). He cites a text on religious conflict resolution as proof that embryonic research is, for many people, sacred no matter what the science says. For this reason, the debate continues in circles.

M. Flower does a good job of detailing the early “life” of an embryo. He shows that a moment of life is impossible to single out because of the continuum of change. As explained in lecture there are no massive markers that denote a new step in the development of life, rather a gradual, even hourly change in embryo development exists. Flower even points out that conception is not a “moment” as most people think of it, but a process lasting 24 hours (p. 438). Timing is the key in embryo research, and people are scared of the implications of experimenting on something that is alive, and yet it’s very difficult, or controversial to decide if dividing cells is indeed life.

To a scientist looking for a cure to disease the hope and promise of embryonic stem cells is necessary, and to the patient looking for a cure for cancer the promise of stem cell research is a last hope. To the person looking to protect the life of the unborn, the process seems to teeter on injustice for the little one who’s life is ending before it had a chance to breath. The issue is so complicated and I sympathize for both sides but it’s hard for me, having read Flower’s piece, to believe that multiplying cells that have not yet differentiated in the preembryo stage are feeling, sensing beings. But, once the neural capacity is present, I do feel it is inappropriate to experiment on the embryo.

I still have some questions: This might be in the readings, I just can find it: at what stage or weeks from conception does stem cell research occur? And if the fertilization is happening in a Petri dish how long do you wait for it to develop before stem cells can be cultivated?

The implications of moving fast

Fortun spends a considerable amount of time on the discussion of the word “fast” and what it means for the field of genomics. In chapter 3 we get a broad range of definitions for the word. I found this fascinating, as I have never thought about the contradictory nature of this word before. I can’t help but wonder what forces created a word that could mean both, “suitable for rapid movement” and, “firmly fixed or fastened” (p. 30). This disjointed, yet connected definition of fast is where we see the chiasmus.

As we continue to look at Fortun’s take on the genome industry I wonder if speed is a good thing. He even explains that, “genomics is faster, more intense than genetics” (p. 31). Didn’t we all learn early on that when we work too fast we make mistakes? I remember being told to take my time and look over my answers before finishing a test to make sure I didn’t make a mistake. Isn’t there something to be said for slowing down?

I also wonder why there is a need to be moving so fast. Is it a race to find the cure for genetic defects? I find it difficult to believe that scientists are working consistently fast just for the generosity or humanitarian aspect of genomics. Is it the race to win fame or a Nobel Prize? I find it more likely that scientists are working towards personal gain, as we have seen the characterizations of several leading scientists in the field to be little more than self-serving businessmen.

This idea of an egocentric scientist is best illustrated by the term/idea of a “biocelebrity” (p. 56). Big shot scientists like Craig Venter and Kari Stefansson don’t seem to be in the race for the promised human health benefits, they are in it to win for selfish gain. We can be sure of this from the personal accounts from others in the scientific community about their character. One explained Kari as having an “extreme need to win” and “incapable of humility” (p. 58).

This desire to win the genome race for selfish gain isn’t really important, but it does illustrate the interconnectedness of all four circles in the scientific process. Public relations do intersect all other aspects of the scientific race towards understanding the human genome.

the real life implications of genetic research

The idea of “molecularization”, brought to the table by Raman and Tutton seems to permeate all the readings this week. When science is brought to its smallest bits and pieces we can get to the personal and introspective aspect of what is often considered big picture science. The study of genetic diseases, reproductive possibilities and stem cell research are all large overarching topics, but once they become “molecularized” into the more base or simple science we see the personal impact. It is important to remember the personal side of clinical science, because people are ultimately being affected by new genetic research. I like to think of molecularization as the process of taking a theoretical idea and applying it to a more tangible, human issue.

Callahan, in his discussion of communitarianism, concludes that biological advances need to be looked at through a new lens. He recommends taking into account human nature, the private and public spheres, the welfare of the whole and human rights when discussing new ethical problems in science. In this way he is asking us to break down, or “molecularize” broad bioethical issues, such as the ones Robertson asks.

In Robertson’s piece the big question: “why reproduction is important and valued?” is followed by the question of a legal framework to protect new advances in reproductive technology. His argument follows that much has been done to protect the termination of a pregnancy, and much will need to be done to protect the desire to reverse infertility and engage in genetic screening and altering of embryos. This is where laws may need to come into place to protect women choosing gene-altering therapies. Again, we see the idea of broad questions having human implications.

When the big picture science is broken down (“molecularized”) we see the advancement of this technology lies in the hands of the people. Or differently said, the power resides in the hands of those for whom the science directly affects. This is what Foucault meant in his exploration of biopower, and the discussion of power from “below”—or us, the people who experience the human implications of scientific theory.

Science and Money

I am not a person guided by financial motivation, nor am I the type of person who thinks in terms of the “entrepreneurial” spirit of capitalism, but when reading about genomics and the race towards technical advancements with genetic modification I can’t keep from thinking about money. The financial imperative keeps catching my eye in the readings. Before knowing what “genomics” meant I though the term was a play on the word “economics.” Although this turned out to be a false assumption, the financial world cannot be left out of the conversation over genetic understanding and advancement.

In the case of genomics, money plays an important role in the progress of data collection and research. According to our in class model of the inter-connectedness of the scientific field and the rest of the world, finances play a part in the “making alliances” section of our science wheel. The strong connection between money and science is most certainly never spoken about in traditional science classes. The large public organizations and private investors that support science are often overlooked, but they are a major player in “messy science.”

First, in Fortun’s “Promising Genomics” the financial incentive begins on page two with the press release from Roche promising $200 million pumped into the project of collecting, analyzing and “de-coding” the DNA of the Icelandic people. I’m pretty sure this initial investment of money was expected to be paid off later when the DNA could be patented and sold to pharmaceutical companies who in turn would use the information to make billions of dollars from drugs to cure the previously incurable.

The financial theme also shows up from Sulstan’s biography in Zwart’s article. Given that Sulstan focuses on the moral aspect of science, he argues that the datasets resulting from the genomic research need to be available to the science community and the public and not kept for private profit. The main idea I see illustrated here is that science has two sides: the public and the private, the former being the more ethical aspect. When science goes private it only benefits those who have money and thus access.

The financial side of biotechnology also has social justice implications. The future of biotech will rest in the hands of those who have the money to use the new advances in science in their own lives. For example, the idea that people could use this new science to determine genetic characteristics in their offspring implies a broadening divide between the “have” and “have nots.” I believe it is necessary for science to be public and accessible for all- this is the freedom of technology that Sulstan argues for.