Posted by: lizbrez | May 24, 2010

“Minotaurs”

Pulitzer prize winning author Jeffery Eugenides brilliantly crafts the character Callopie “Cal” Stephanaites who is an intersexed person of Greek descent in Middlesex: A Novel.  As the novel’s narrator, Cal takes readers on a journey of his Greek heritage beginning with the marriage of his grandparents who are also brother and sister up through his own life at age 15 while incorporating snippets of his present day life often at the introduction of new chapters.  The introduction of his grandparents began the discussion of the recessive gene, 5-alpha-reductase deficiency, that was passed down through two generations to cause him to be born with the characteristics of a female.  The genetic component of the novel traces how Cal ended up with two copies of the recessive gene and faced the knowledge of being a hermaphrodite in his teenage years.  Further than just the tracking of genes, Cal illuminates several themes that have been explored in our class Genomics and Social Life.  The introduction to the chapter, “Minotaurs” in Book 2, successfully deals with the genetic ideology of the molecular model of the family as presented by Nelkin and Lindee in The DNA Mystique and biotechnological individualism presented by Taussig, Rapp, and Heath in their article Flexible Eugenics.  Cal reveals that like most hermaphrodites, he will be unable to have biological children because.  Nelkin and Lindee stress that the ideal molecular family bases familial relationships only on shared biological material.  Cal will never pass on his genes to a future generation and also feels that without the prospect of having children, he will never succeed in creating a meaningful marriage.  This decision has also led him to only want a temporary living situation in each place he visits which made the decision to join the Foreign Service an easy one.  Due to these life choices, Cal will not conform to the genetic ideology of the nuclear family based on shared genetic material in adulthood.  The result of him being part of a molecular family in the generations of his grandparents, parents, and now Cal and his brother was the inheritance of a recessive mutation that other family members shared but only he expressed.  Biotechnological individualism, as Taussig, et al defined it, is the choice of using biotechnology to express an individual interest or personal taste.  In the introduction to Minotaurs, Cal reflects on the intersex movement which put an end to infant genital reconfiguration surgery.  Prior to the movement, parents had the choice to submit their child to genital reconstructive surgery if they had severely ambiguous genitals.  The movement aimed to end this nonconsensual infant surgeries and allow intersex to be considered as an identity and not as an abnormality (JAMA article, Letters from the Intersexed).  Cal explains that the struggles is to convince the world that “hermaphroditic genitals are not diseased” (Eugenides 2002:106).  In Middlesex, Cal expresses biotechnological individualism by refusing genital reconstruction surgery in his teens and refusing to be reliant on hormone injections to conform to one sex.  His choice demonstrates that he feels it is possible for hermaphrodites to assert an identity that is neither male nor female.  Previously, mothers and fathers were taking the advice of the physician and making a decision to “correct” the abnormal genitals without the consent of the child.  The intersex movement aimed to allow the child to make this decision when the time was appropriate providing that the child was not in any serious medical danger.

Cal’s dialogue about having a family also resonates with Joanna’s story in the movie In the Family. Joanna encounters women and men who feel guilty about the possibility of passing the BRAC genes to their children.  Cal’s grandmother Desdemona prays to the Greek Orthodox God’s that she will not have any more children after Milton if Milton is born a normal child because she has been told tales about inter-family marriages resulting in giving birth to monsters.  Milton is single sexed but Desdemona proceeds to give birth to Zoe violating her prayer promises.  Joanna also faces the decision to have her ovaries removed in order to reduce her odds of getting ovarian cancer which destroys her dream of having a family.  Cal as Callopie never mentions the desire to get married and have an ideal molecular family but his infertility is the result of inheriting the recessive genes.

BiDil is a medical therapy that confers identity onto the individual who is prescribed the treatment.  Some individuals may consciously choose and have no issue reaffirming a racial identity.  Others may be hesitant to choose a therapy for heart failure that requires self-identification as “black” or multiracial.  The choice to consume BiDil, cost factors aside, may be interpreted as an expression of biotechnological individualism.  Taking the medication allows individuals to connect to others taking the prescription along racial lines as well as differentiate themselves from Caucasian heart failure patients.

Posted by: lizbrez | May 19, 2010

Ruha Benjamin’s discussion of ‘genomic sovereignty’ in the article, A Lab of Their Own: Genomic Sovereignty as Postcolonial Science Policy, reveals the pharmacogenomic aspect of my socio-genetic object, BiDil.  To begin, Benjamin describes ‘genomic sovereignty’ as a way for countries outside of North America and Europe to exercise ownership over the DNA of their population.  This initially raises the question that has brought up several times in class about the validity of claims by governments and other companies to own DNA data as private property.  Benjamin continues to contrast the genomic research initiatives of various governments with those in North American and Europe and in doing so, highlights racial therapies already on the market in the US.  The discussion of pharmacogenomics begins in section, “1.3 Biological Brands”  and is posed as either a solution to ‘pharmaceutical marginalization’ or an enormous waste of resources.  ‘Pharmaceutical marginalization’ is caused by a lack of access to drug therapies.  This inequality can either refer the historic issue in the US of the lack of access to health care and therapies experienced by African-Americans or the future lack of access to pharmaceuticals that are tailored to specific population genomes by those countries excluded from the International HapMap (Benjamin 2009: 345).  Pharmacogenomics would offer a solution to diseases faced by distinct populations throughout the world rather than relying on proxies to design medicine for the entire world’s population.  With each country focusing on its own population, therapies can be tailored to genetically distinct (this is a large debate in the article and among genomics researchers in general) groups for effective care.  On the other hand, some argue that investments in pharmacogenomics could cause significant financial strain if unsuccessful due to it being an impractical form of health care.  Investments in research methods and the cost of manufacturing personalized drugs could economically destroy a country if the therapies do not create a better alternative to traditional care.  BiDil proponents argue that the racially-specific drug is a symbolic step towards the recognition of health disparities in the US and is the first visible step towards addressing inequalities in health care.  However, the sale of BiDil has been much lower than anticipated which raises the question of if it belongs in the category of a solution to ‘pharmaceutical marginalization’ or a waste of resources.  Parallel to the debate about the benefits and risks of pharmacogenomics is the debate over “biologically branding the nation in order to develop profitable pharmaocogenomic markets” (Benjamin 2009: 345).  These markets, refered to as ‘bioethnic’ markets , developed, “through the process of ‘niche standardization’, whereby human bodies are classified as neither part of a universal or as individuals, but as biologically meaningful social groups” (Benjamin 2009: 345).  Pharmacogenomics can only be fully implemented in practice if distinct biological social groups are defined by being genetically distinct from another social group.  This information would allow researchers to design population specific drugs.  However, the process of “biological branding” has yet to be resolved.  In the case of BiDil, self-identification categorizes African-American heart failure patients as being eligible for the drug.  Self-identification was also the method for enrolling patients in the A-HeFT trial to determine the potential benefits for African-Americans.  Genetic differences were not the basis of creating a biologically meaningful social group.

Alondra Nelson convincingly argues in her article Bio Science: Genetic Genealogical Testing and the Pursuit of African Ancestry, that people who use standard genealogical methods, like those Alex Haley used in his book Roots, to trace their African ancestry beyond the 19th century face many obstacles, often resulting in a “brick wall” (Nelson 2008: 764).  When DNA testing entered into the picture, these ‘root-seekers’ viewed the new technology as a way to fill in data that prior efforts had failed to reveal about their identity.  The characters presented in Nelson’s interviews have shown that DNA testing can both lead to a plethora of new questions about identity and belonging rather than settling them as in the case of Pat or DNA testing can help people towards a feeling of completion.  The second sentiment is presented by Nelson as stereotypical of the stories presented by UK and US media outlets.  These “unsettling kinship narratives are stories of persons whose presumed racial and ethnic identities are overturned by genetic testing” (Nelson 2008: 775).  The “predictable arc” of these kinship narratives in popular media “leave little doubt that genetic truth of identity and kinship will out, that social categories such as ‘race’ and ethnicity are being made anew from the whole cloth of As, Cs, Gs, and Ts” (Nelson 2008: 775).  As a result of this observation, Nelson leaves the reader with the impression that through the use of the press, social categories of race and ethnicity are slowly being transformed into genetic categories that can be confirmed through the seemingly infallible DNA tests.  Furthermore, she argues that the media’s portrayal of DNA testing is that it will lead to the confirmation of identity and a conclusion to their search for belonging.  However for some, DNA tests are just the beginning of the process of identification rather than the conclusion.  For Pat, uncertainty in DNA testing was a consequence of receiving test results that traced her genealogy to the Akan people of southern Africa.  She had grown up her entire life believing that her ancestors were Hottentot and had pieced together much of her lineage through traditional genealogical methods.  Contrary to the kinship narratives where DNA results are interpreted as the truth due to the belief in the infallibility of scientific methods, Pat held much doubt about the reliability of the techniques used (Nelson 2008: 770).  The feelings of numbness and feelings of ‘blankness’ that Pat experienced are summed up in Nelsons term, ‘genealogical disorientation.’  Nelson says that she has encountered several individuals for whom the receipt of genetic facts about ancestry opened up new questions of identity rather than settling them absolutely (Nelson 2008: 770).  On African Ancestry‘s website, one of the DNA test providers that Nelson references in her article, there are many references to notable African-Americans who have used African Ancestry’s service to find their roots.  Mentioned on the home page are Spike Lee, Isiah Washington and India.Aire.  Additionally, the website offers a series of YouTube video’s that explain the motivations behind paying for DNA testing through African Ancestry.  The first part is titled “African Ancestry Part 1: Finding Your Identity”   Vanessa Williams and Isiah Washington were featured in the video receiving their results.  The message that was being sent to the viewer is that knowing where your from is a critical component of knowing who you are.  The video also states that African-Americans are the only demographic that cannot claim any one country of origin.  One man discusses how he felt lost at an elementary cultural fair because he thought he could not participate or engage or claim any type of native land like his classmates of other origins could.  These stories speak to the first sentiment about DNA testing presented above.  The testimonials speak to the confirmation of identity that is offered through DNA testing.

For African-Americans who opt to take the prescription BiDil for heart failure, the drug is a confirmation of identity.  Members of the scientific community ran tests on African-Americans in order to determine the statistic significance of the medicine for treatment for heart failure.  The combination of scientific trials and statistical analysis led the FDA to approve the medication.  Thus, the FDA is relying on the truth of scientific data from the A-HeFT trial and the facts of statistical analysis to back up its ruling to market BiDil as a race-specific drug.  This story is presented in a similar way to the first experience of the DNA testing for genealogy.  The marketing of BiDil to the African-American community calls them to reaffirm their identity and association with an African lineage in order to qualify for treatment.  Once the drug is obtained, the patient no longer questions his identity as it is implied through the use of the medication.

In chapter 3 of Sarah Wagner’s book, To Know Where He Lays, she calls attention to two innovative “code” technologies.  The first barcode that she discusses is a barcode that “blinds” the donor’s blood sample by attaching a number to the both the bloodstain card of the donor and the accompanying paperwork.  The second coding technology that she highlights is a combination of letters and numbers that serves as a reference code for bodies being exhumed in mass gravesites.  The goal of “coding” various aspects of the identification process are both to protect the identity of the surviving family members who are donating blood to the cause and to be organized in collecting the remains of victims.  The ICMP’s approach to creating an anonymous or barcoded databank of DNA directly contrasts with deCode’s approach to creating a universal Icelandic DNA databank as presented by Hilary Rose in her ethnography.   The barcode technology used by the ICMP to label donor blood samples was created to serve two major goals: the first goal was to safeguard the identity of the donor and thereby remove bias.  In the aftermath of the Srebrenica genocide, it is crucial to remove an ethnic bias in order to remove politics from the situation of identifying missing persons.  Individuals of various ethnicities participated and died in the genocide so identifying donor’s samples in the absence of any personalized information removes the human bias that some lab technicians might feel when processing the blood sample.  The second goal was to catalogue the data in a streamlined manner thus protecting against human error.  Wagner argues that the barcoding or “blinding” technique implied an apolitical agenda and would remove any skepticism that they might meet from authorities (Wagner 2008: 106).  This type of coding allows individuals who opt-into blood sampling to know that their identity will not be compromised once the DNA sample enters into the database.  This effort was not a concern in the Icelandic DNA databank proposal as there was initially presumed universal consent and then a lot of red tape to opt-out of having health records and DNA samples entered into the databank.  deCode’s priority was not to safeguard personal information rather to use it in a biomedical marketplace for economic gain.  ICMP’s mission was to identify as many victims of the violent genocide and restore them some humanity through proper burial procedures.  The humanitarian goals of the ICMP clearly shows why barcodes were of the utmost importance.  The second coding technology was a reference barcode attached to the body or bodyparts of an individual dug up from a mass gravesite and also attached to the remains found along with the body (Wagner 2008: 108).  The reference codes on bodies can be seen in these two photos:  Serbrenica victim with reference code and Serbrenica victim with reference code2.  Forensic anthropologists used this method in order to keep track of remains that should be analyzed together and to signify that this body has been examined and is ready for the next step.  These two reference methods seemed to organize and streamline the seemingly impossible process of identifying the thousands of dead people.  It is nice to see that the ICMP implemented technology with clearly defined precautions to protect survivors and victims.

In the case of BiDil, ethnic information, collected either on an patient’s medical intake forms or assumed from physical characteristics, is necessary for prescribing the drug for heart failure patients.  Therefore, human bias must be assessed when doctor’s take down patient information and how they determine if a patient is of an appropriate ethnicity to receive the drug therapy.  The use of personal information in the case of BiDil cannot be safeguarded or confidential.  The knowledge of heritage and physical expression of race through skin color must be reaffirmed to be prescribed BiDil.  Furthermore, those who know about the racial drug will also be reaffirmed of a friend or family member’s identity when they are told about the prescription or see the prescription in the patient’s home.  The inability to conceal race thus does not allow human and ethnic bias to be eliminated from BiDil.  It has in fact been exploited by the company NitroMed in order to secure approval for a profitable drug.

In Hilary Rose’s ethnographic piece The Commodification of Bioinformation: The Icelandic Health Sector Database, it was shocking to read under the section titled, “1999 Opting Out of the HSD” (Rose 2001: 24) that unborn children lose their unqualified right to opt out of the HSD database.  In addition, any children that are not of legal age by the mid-June 1999 deadline will have their health records placed into the database.  Throughout the entire article, Rose portrayed Iceland’s government as lacking any sense of human rights awareness.  This information about the clear violation of children’s rights in HSD legislation contributes to an outsider’s disbelief that a modern day country could turn its eyes away from this portion about opting-out in the HSD legislation.  The brief history she gave to the construction of the ‘good population’ of Iceland did not reference any severe human rights violations such as slavery in the US or human trafficking in Asia.  It should also be noted that the  Amnesty International website does not have a human rights report or any other documents reported for Iceland.  Returning to the opportunity to “opt-out,” Rose had stated in this section that the debate, “did not mobilise much interest among women… they did not feel sufficiently involved personally to act” (Rose 2001: 24).  This is in contrast to reading her section, “Gender Perspectives: Commodification or the Concern for Family” (Rose 2001: 26) which followed later in the article.  This section had a much more elaborate description for the fears that women had regarding the future for their children and portrayed them as engaging in the debate through discussion groups.  One woman who had breast cancer and a family history of cancer was disturbed by the commercialism of HSD and the impact it had on the patient-doctor relationship (Rose 2001: 27).  She expressed her inability to see future medical care as authentic and clinicians as truly concerned about the well-being of her family.  In contrast to women’s concern for their family, another perspective was illuminated in this section.  Some of the women who had been sexually abused saw the public health database as a tool for justice.  Some felt that the DNA record would reveal just how many men had sexually abused their own daughters and expose abuses that had been suffered.  Others saw the HSD as a vehicle to expose their painful secrets and saw opting out as the only way to protect their precious confidentiality.  Women participated in discussion about the database in Iceland both for their own benefit and in looking to the future of their family.  When educated about the controversy, many women expressed the need for their relatives to opt-out in order to protect their children.  Others viewed opting-in as the way to expose acts of injustice such as domestic violence and sexual abuse.

The case of opting out of Iceland’s HSD is in contrast with the requirement to “opt-into” a racial category in order to be prescribed BiDil as treatment for heart failure.  For patients who suffer from heart failure, it is not as simple as having the disease and receive generic treatment, but to get supplemental treatment with BiDil, patients much reaffirm their identity as a person of color to be given treatment.  Thus, the controversy surrounding the first racial drug is that it become exclusive to those who are African-American.  The controversy extends beyond this to a confirmation that race can distinguish an individual genetically from another individual.  It would be interesting to note if the diversity of ethnicity and race in the US would be helpful or hurtful to a database like the HSD.  As a nation with a history of racism and one that uses race often in government such as the US census, it would seem obvious that finding markers for race and categorizing health care records based on race would be a goal of a company like deCode.

Posted by: lizbrez | May 3, 2010

Forensic Science: Human “Error” Potential

In Shelia Jasanoff’s article titled, Sheila Jasanoff, “Just Evidence: The Limits of Science in the Legal Process” she presents a quote from the Massachusetts Citizens Against the Death Penalty (MCADP) to kick off a discussion on the types and the role of human error that intervene in forensic science, “‘Human error can creep into the collection and analysis of any kind of scientific evidence'” (Jasanoff 2006: 335).  The MCADP statement is responding to Massachusetts Governor Mitt Romney’s argument presented earlier in the article that scientific evidence is foolproof, just, and failsafe, and thus can be used to perfect the death penalty.  Jasanoff continues to distinguish between the types of error, “The first is due to human beings’ failure to perform technical tasks as they out to be carried out in an ideal management system… amenable to correction through better training, more internal checks and more rigorous quality control measures.  The second is due to the normative pressures that are, even in theory, less easy to correct” (Jasanoff 2006: 335).  The first is considered “human error” and is correctable by changes in education, laboratory equitment, and oversight while the second is the result of pressure to produce quick and conclusive results as a consequence of societal expectations.  A YouTube search of “forensic science” turned up a short clip by the University of Alabama at Birmingham’s news station.  Jason Linville, PhD, discusses forensic science in the clip titled, “How to Become a Forensic Scientist.”   This clip’s title caught my eye because it appeared that someone was going to teach the viewer how to become an expert in the field of forensic science in a matter of 1 minute and 42 seconds.  Obviously this is not possible, but the chance that watching YouTube videos could lead to professional forensic scientists speaks to the first type of error Jassanoff pointed out- human error due to a lack of training.  Clearly scientists do not get their training through popular websites but care should be taken to properly educate individuals who will hold the fate of suspects in criminal cases in their hands.  Mr. Linville starts out by mentioning popular culture’s portrayal of forensic science in T.V. shows such as CSI to illustrate the aspects of forensic science that reaches the everyday individual.  While I do not watch CSI, I might venture to guess that the investigators on the show get the case right 9 times out of 10.  The show likely does not portray fraud as in the case of Detective Harding (Jasanoff 2006: 336) when he fabricated fingerprints in order to incriminate a suspect.  We see T.V. and movie portrayals of crime scene investigators as heroes who diligently search the crime scene for clues.  Linville continues to distinguish between two types of forensic scientists- something that Jasanoff does not address in her article.  First there is the crime scene investigator who processes the crime scene and collect the evidence but doesn’t participate in the analysis.  The evidence that is collected by the investigator is then sent to a laboratory where laboratory forensic scientists analyze the evidence that was collected from the crime scene.  The need for two different professionals to produce legally relevant fingerprint or other forensic data speaks to the specialty involved with forensics and also to the miscommunication/ fraudulent activity that can occur.  On the Innocent Project’s website Innocent Project: Forensics under “Understanding the Causes” there is an article titled, “Forensic Oversight” which provides the staggering statistic that, “In more than 50% of DNA exonerations, unvalidated or improper forensic science contributed to the wrongful conviction.”  According to Linville’s description of the roles of crime scene investigators and laboratory forensic scientists and Jassanoff’s description of the error associated with normative pressures, it is possible to see that there are many places that forensic science can be fabricated.  The conclusion that must be highlight is that, “DNA evidence is vulnerable to human error and, especially in the context of law enforcement, also to organizational pressures that are likely to enhance the risk of false identifications” (Jasanoff 2006: 339).  Furthermore, science should enter the court room merely as a piece of evidence taken in the context of the larger story being told rather than taken-for-granted infallible data.

The first company to request FDA approval for BiDil was Medco and they sought to earn approval for use by the general population.  Dr. Cohn, the founder of BiDil, had performed clinical trials on veterans’ hospital patients in the hope of producing results proving BiDil’s benefits for those with heart failure.  The FDA denied BiDil on its initial submission due to statistical concerns that the earlier trials had failed to account for multiple endpoints that were being analyzed.  The trial also did not answer the question of what benefit BiDil was in addition to standard heart failure therapies.  This initial rejection led Dr. Cohn to perform the race-specific trial and later get approval for a race-specific drug.  However, given the examples of scientific fraud that Jasanoff points out in her article, it is relevant to wonder what would have happened if Dr. Cohn had forged statistics on the drug’s benefits to general population of heart failure patients.  Profit motives certainly could have driven him to fabricate data in order to secure approval.  Had this occurred, BiDil would not be under the same racial controversy that it is currently in.  Would Dr. Cohn have been exposed eventually as many other scientists have?  What other drug would have emerged as the first race-specific drug?  Certainly, BiDil would not be on the market today or analyzed throughout this blog as a socio-genetic object.

Peter Conrad directs readers to become wise consumers of health care as he argues that the phenomena of commodification of health services and commercialization of medicine in the US is a present and complex issue.  In his article, “The Shifting Engine of Medicalization” (http://www.docstoc.com/docs/34782478/The-Shifting-Engines-of-Medicalization),  he states that managed care has paved the way for medical care organizations and doctors to emphasize profits over patient care (Conrad 2005: 10).  Edward D. Pellegrino agrees with this sentiment in his article, “The Commodification of Medical Health and Health Care: The Moral Consequences of a Paradigm Shift From a Professional to a Market Ethic” in the Journal of Medicine and Philosophy (http://jmp.oxfordjournals.org/cgi/content/short/24/3/243) and further argues that a full-fledged paradigm shift has led medical professionals away from the compassionate patient-doctor relationship to viewing the patient as a commodity.  He concludes that health care should not be treated as a commodity and by extension, the patient should be treated as a human being.  Unfortunately, by Conrad’s analysis, it seems inevitable that health care is heading toward the competitive marketplace and that Pellegrino’s conclusion will only hold if an advocacy group for patients’ rights and the social forces that shape the future of health care are redirected to advocate for patient centered medicine.  Pellegrino also makes clear that a “good society” has an obligation to protect health as a human good from the marketplace.  Conrad echoes this when he reveals that managed care organizations are increasingly dictating what is medically appropriate and inappropriate.  According to Pellegrino, the responsibility should then fall on the medical care organizations to ensure the best care and treatment for individuals in society.  As the arbiter in this case, they have the opportunity to set a precedent for the role of monetary incentives in the development of new medications and the experience of patients when they receive medical treatment.  Managed care requires preapproval for medical treatment which is applicable to my socio-genetic object BiDil.  Doctors have the responsibility in prescribing BiDil to ensure that the patient fits the racial criteria for the medication.  Therefore, they serve as the gatekeepers in the process of receiving BiDil for heart failure.  Also, in the case of BiDil, the pharmaceutical company NitroMed is one branch of the health care industry that has emphasized profits over patient care.  BiDil’s maker played the competitive marketplace for personalized pharmaceuticals by requesting FDA approval for a heart failure treatment for only African-Americans.  In relationship to Conrad’s article, NitroMed certainly contributed to the medicalization of race in the context of drug therapies aimed to treat everyday conditions.

The introduction to Nikolas Rose’s 2007 book, The Politics of Life Itself, (http://books.google.com/books?id=vKmCcHpMiZoC&printsec=frontcover&dq=the+politics+of+life+itself+rose&source=bl&ots=iGxnxZqlGz&sig=-tH82AiziPbECHpN9UhFhT1jrk0&hl=en&ei=lHHOS8SVEoWGNsGaqQ4&sa=X&oi=book_result&ct=result&resnum=6&ved=0CCcQ6AEwBQ#v=onepage&q&f=false) begins by exciting readers who are hopeful about the future of personalized medicine, genetic engineering, and the regeneration of organs in culture.  This sentiment fades as Rose describes that the bioeconomy associated with the biotechnoloical advances is recruiting specialists in medicine and science who otherwise would have been carrying out research on basic health issues.  Rose argues that this diversion of professionals aims to create novel therapies that will in turn serve a small minority and generate large profit.  The minority who have access to these treatments initially will have to be wealthy to afford the therapies and thus those at the higher rungs of society will continue to thrive with improved health.  Rose further argues that the attention that is being given to the highly lucrative bioeconomy (Rose 2007: 2) results in the neglect of the research to address the health issues of the majority of society.  This situation widens health disparities between socioeconomic groups in our own country and throughout the world.  Therapies to prevent or treat illnesses such as HIV/AIDS, diabetes, malaria, and TB, which affect a large proportion of the international community and especially the poor, are pushed aside in favor of the potential of biomedical advances.  This observation runs perfectly parallel to Rose’s comment that pharmaceutical companies have been singled out and accused of selling many new drugs at inflated prices with false promises (Rose 2007: 2).  Instead of focusing energy and manpower to fancy personalized medicine, it is crucial that pharmaceutical companies work on developing affordable therapies to countries who suffer epidemics preventable illnesses.  One pharmaceutical company that has escaped this stereotype is Pfizer who donated $17 million worth of its antibiotic Zithromax to the International Trachoma Initiative (http://www.pfizer.ca/english/newsroom/press%20releases/default.asp?s=1&year=2005&releaseID=181).  Trachoma is the leading cause of blindness by infectious disease and due to Pfizer’s generous donation, a majority of the population who suffer from this preventable illness are being cured in 18 countries in Africa and Southeast Asia (http://www.trachoma.org/core/sub.php?cat=country&id=country).  Trachoma is preventable by proper hygiene and sanitary citizenship but in low income countries, public infrastructure to support such healthy behaviors is not a priority.  However, Rose continues to say that with the future of medicine and the devolution of many of the responsibilities for the management of human health in the US, there is an increasing emphasis placed on the individual to manage their own health issues (Rose 2007: 3-4).  Ownership of ones health is possible only in a country where mechanisms are in place to ensure that everyone has access to care and health education.  Rose states that patients are being encouraged to take an active role in the medical care and responsible consumers of medical services including pharmaceuticals (Rose 2007: 4).  Immediately, the website WebMD.com pops into my head.  This website has become referenced in numerous conversations in our culture when people are trying to piece together symptoms to generate an accurate diagnosis.  WebMD synthesizes the symptoms and becomes and authority on health so that the lay citizen can treat her illness appropriately.  It is unrealistic to think that the average person will become an expert in medicine the new politics of life in our liberal democracy requires that citizens take on some responsiblity for their own health.

BiDil is a pharmaceutical that targets the narrow population of self-identified African-Americans with heart failure and costs patients without insurance $1.80 per tablet.  The regimen is three doses daily amounting to $162 per month at whole sale cost (http://www.theheart.org/article/521555.do).  The article indicates that this is priced way beyond the means of the drugs target population.  NitroMed, the company that makes the drug, offers a “payment assistance program” making the treatment free to those who are uninsured and up to some small multiple of the poverty level.  The necessity of a payment plan clearly highlights the inflated prices that Rose is referring to.  The drug BiDil also speaks to Rose’s article when he talks about pharmaceuticals that medicalize nondisease conditions.  In this case, BiDil medicalizes race because only a certain population receives the intended pharmaceutical response.

Posted by: lizbrez | April 19, 2010

Flexible Eugenics: Biosociality and DNA Microarray Chips

Taussig, Rapp, and Heath offer up Paul Rainbow’s (1996) term biosociality in their article titled, “Flexible Eugenics” in the book “Genetic Nature/ Culture: Anthropology and Science beyond the Two-Culture Divide” (http://books.google.com/books?id=mldvx-hYtmoC&printsec=frontcover&dq=genetic+nature/+culture&source=bl&ots=3h-dOFsJ00&sig=VAkIGjgU_yzt6cG4s2_CM_NFF-E&hl=en&ei=SnHMS6DBPJfEMf2Y9YUF&sa=X&oi=book_result&ct=result&resnum=3&ved=0CBkQ6AEwAg#)  The authors define biosociality as, “the conscription into a new identity politics as people come to align themselves in terms of genetic narratives and practices”(Taussig 2003: 60)  The authors present the Little People of America (LPA) as an organization that is an example of biosociality because LPA brings together individuals who bear a diagnosis of one of many heritable dwarfing conditions.  First, identification of oneself as a ‘little person’ requires that you self-select into a category that is not part of the societal norm of physical appearance.  In the case of dwarfism, this identity is further backed up by genetic markers that distinguish you on the DNA level and not just a phenotypic level.  Thus, dwarfism becomes part of the genetic discourse that has permeated our culture.  The LPA is therefore able to recruit individuals who have inherited dwarfism into a community that shares a group identity; the organization supports those who are of a certain height rather than just those who have a particular medical diagnosis.  This “genetic enrollment” faces those African-Americans who must self-select themselves into a racial category in order to be prescribed the medical drug, BiDil.  This pharmaceutical is the perfect example of new identity politics at play where people must align themselves with certain racial, gender, and other “genetic” categories due to a genetically defined modern world.  In addition, dwarfism, like race in Nazi Germany, is increasingly viewed as a human condition that is susceptible to improvement.  While the US has a long history of discrimination towards African-Americans, it is unlikely that BiDil is a genetic technology that aims to rid our culture of a particular race.  Its goal is to improve the health of those already afflicted with heart failure.  While the FDA views this as a positive thing that at least one population is benefitting from a medical therapy it is crucial in the future to eliminate the source of health disparities in this population rather than treating them.  This would eliminate the controversial need for African-Americans to categorize themselves into a racial category.  Dwarfism and genetic technology on the other hand has a very different relationship.  LPA members fear that biomedical technologies like the microarray chip, prenatal testing and social technologies aim for genetic improvement that will ultimately result in the elimination of dwarfs from society.  The microarray chip is certainly controversial as a 2005 editorial in Nature (http://www.nature.com/nature/journal/v438/n7069/full/438711a.html) reveals the absence of a regulatory framework for prenatal genetic tests.  These prenatal tests can predict a patient’s tolerance to drug treatments (e.g. BiDil) or detect fetal abnormalities (e.g. Dwarfism).  However, due to the absence of regulation there is a free-for-all in marketing genetic tests to the public and an even scarier potential for misdiagnoses based on chip analysis that results in babies born with unexpected diseases or fetuses terminated based on false information.  The editorial ends with a plea for the FDA to establish itself as a regulator of this genetic technology before disastrous consequences like those highlighted above occur.

Z. Bauman discusses metaphors of gardening and medical techniques for social engineering by referencing the opinion of several individuals in both the physical and social sciences. The metaphor of a garden with the state as a gardener, the population as the garden with weeds or flourishing plants as deviant or reasonable individuals symbolizes the political goal of breeding the human race. Metaphors have characterized the collection of readings so far beginning with Descartes’ the world is a machine to mapping the human genome is, “the search for the [Holy] Grail”(Lewontin 2000: 11). The metaphors that describe biology in Lewontin’s “The Triple Helix” are certainly needed to describe such abstract aspects of human biology as ‘capacity’ or ‘genes.’ It was noted at this point that metaphors that describe biology must be taken with a grain of salt so that the characteristics of the object we are familiar with are not incorrectly applied to abstract scientific concepts. The metaphor of the garden that Bauman emphasizes to describe the political program of social engineering is less likely to be interpreted literally. That is, the reader would less readily apply characteristics of gardening, such as hoeing or watering, to the political authority or traits of a flower, such as having petals and reproducing through pollination, to a human being. However, this metaphor takes root (no pun intended!) in modern history in order to show how political groups harnessed scientific and industrial progress to find novel solutions to social problems and to establish a rational order of civilization through unrestricted education and social reform. Bauman indicates that this was implemented to weed out carriers of congenital disease, the mentally inferior, the bodily deformed and the most famous example, Jewry (Bauman 1993: 29).

Those who implemented the gardening and medical techniques in social engineering were guided by the understanding that they were merely carrying out the mission of science to establish a healthy and orderly society. In the case of BiDil, the medication was approved to better the health of African-American’s in society. However, the drug acts as merely a Band-Aid to the unhealthy in society instead of reaching the core of the unjust social structures or unfit people as social engineering does. It would be wise for researchers to consider directing funds away from developing race specific pharmaceuticals and redirect them towards reforming the health care structure to eliminate discrimination. This model would follow that proposed by the gardening metaphor and could piggyback on the recently passed health care reform legislation. Instead of individuals being the weeds and flowers, the health clinics, health insurance companies, and big pharmaceutical companies that are governed by US legislation would symbolize the plants in the garden. They could be sorted through to weed out the corrupt policies, including patent laws and barriers to access, that support widening health disparities between African-Americans and the rest of the population in the US. Thus, health care would be just another weed that “inhabited the plot marked for the carefully designed garden of the future”(Bauman 1993: 29).

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