Genetic Diagnosis, ethnography and patient driven research
New Horizons In Genetic Diagnosis Alicante, march 18th and 19th 2013The Social Construction of Predictive Genetics and the Need for a Patient Driven Research An ethnographic approach to biomedical policy making in PGD/PCS - CARLOS BEZOS DALESKE -
A simple car commercial cantell us a lot about our society
A car is• A physical object• An important element of economy and social relations• A symbol
Mechanics, Thermodynamics and Chemistry Manufacturers and CapitalAdvertising and branding
SCIENCE SOCIAL RELATIONS NARRATIVES Mechanics, Manufacturers and Capital Advertising andThermodynamics branding and Chemistry TECHNOLOGY
SCIENCEHard facts obtained byexperimental researchand validated by peers
…and moreSOCIAL RELATIONS • Power • Class • Gender • Flows of goods, capital, people • Values • Symbols • MaterialsThe creation and positioning of • Resistancesocial groups in relation toother in a given society • Transgression • ETC. ETC.
NARRATIVES Transmission of knowledge, values and believes for the reproduction or change of social relations …
Cobweb of predictive genetics PDG/PCS Religous and Diseases that can moral believes: Science and be avoided research whatis a human? Brave new world narratives & fears from presentIndustry andemployment Patients Brave new world Marketing Fears from the past
Clifford Geertz and Cultures as textApplying ethnographyand thik description topredictive genetics
Ethnography of two clinics: London and Leeds Insight 1: creation and polarization of narratives • Doctors and scientists create a narrative of science fiction around PGD: - “brave new world”, “revolution of genomics”, “a world free of hereditary diseases” • Media react with narrative of designer baby and scientists going too far • Activists and patients associations react with narrative of eugenics and science playing god “Born and Made” authors Sarah Franklin and Celia Roberts • Politicians work with narratives of one or the other fieldMethodology: • Genetic determinism is the shared believe of• Participant observation at two researchers, physicians, activists, media and PGD centers in the UK politicians• Interviews• Media and policy analysis
Ethnography of two clinics: London and LeedsInsight 2: patients suffer; they do not want designer babies• Patients come with a lot of previous suffering- Miscarriages- Infant death- Living with a disabled child• They do not express the wish of phenotype selection or other kind ofselection• The driver for PGD is suffering
Ethnography of two clinics: London and LeedsInsight 3: patients are not in the center ofresearch• Research is done for the patient, not with thepatient• Marketing strategies reflect positivistnarratives of biosociety and geneticdeterminism• Marketing strategies are not built aroundpatient’s needs and suffering• Service design is clinical centric, not patientcentric
Ethnography of two clinics: London and LeedsInsight 4: debate is oversimplified or overrationalised• Researchers and physicians are also uncertain about the future• They are far from genetic determinism and biosociety narratives• Scientific progress is paradoxical and contradictory: it is no linear• Futorology narratives are built by marketing departments and by media• Public debate becomes thus oversimplified at media and overrationalisedat science
Ethnography of patients associationsMethodology:• Participant observation at New Zealand Organization ofRare Disorders NZORD• In depth Interviews with families Ruth Fitzgerald, author of Biological citizenship at the periphery: parenting children with genetic disorders
Ethnography of patients associations Insight 1: Difficult relationship with biomedical sciences • Disabled people experience testing as if they could have been erased • Patients live their disease and disability as part of their identity they want to cure, but also not to be deleted • Medicine is seen both as a hope for cure and as a threat against identity
Ethnography of patients associationsInsight 2: Activism gives collective identity• Living with disability is almost a militarycampaign-24 hour care- Dealing with 30-40 government actors- Dealing with the extended family for help• Small victories in individual battles havebenefit for all the patient community• Sense of pride and belonging: disease becomes LAM (Lymphangioleiomyomatosis) charity auction UKidentity• Differences and fights among activists: “mydisease worse than yours, I have more right tosupport”
Ethnography of patients associationsInsight 3: Differences private opinionsand behaviors vs. public opposition togenetic testing• In depth interviews show that allactivists love their children and fight forthem• But most of them would never go againthrough the experience• Many would make a test now if given thepossibility• Other lines of conflict:-“what would my (born) children say if Ideprived them from life and did not doeverything for them?”- versus “what would my (unborn) childrensay if I brought them to a life of severesuffering?”
Ethnography of patients associationsInsight 4: Ethical and religiousbelieves come rather fromexperience, than from opinionmakers and churches• Attitudes towards genetic testingare deeply rooted in pursue of virtueand “do the right thing”• Opinion leaders and churches donot play a key role• Rather the personal experience ofsuffering• For some, “you find God in givingyourself to those that are broken”• Others get broken caring for theirchildren• The decision making point are ideason human dignity and when anembryo becomes a human being.
The politics of Human Embryo Research – Construction of the Human Fertilisation and Embryology Act 1990 1978 first in vitro fertilisation baby 1978 first use of PGD1996 first cloned higher vertebrate One of leading countries stem cell derivation
The politics of Human Embryo Research – Construction of the Human Fertilisation and Embryology Act 1990 Departing question of Mary Warnock for the report • What kind of society can we live in with a clear conscience? Premises to answer the question 1. Take seriously the diversity of moral feelings 2. Barriers not to be crossed. No limits = no scruplesMary Warnock, 1990 3. Aknowledeg opposite views and get maximum of consense
The politics of Human Embryo Research – Construction of the Human Fertilisation and Embryology Act 1990A new social contract for bioscience• Obtain the maximum of scientific innovation with the strongestregulation• Socially acceptable and socially unacceptable are categories that bringus further than right or wrong
Breaking the cobweb – the logic of power 1. Diane Wood’s husband, Stephen, dies of meningitis 2. The physician takes without permission sperm from the corpse 3. Diane Wood was legally prohibited to use it for pregnancy 4. As a professional publicist she started an effective campaign with tabloid support 5. She went to Belgium to get pregnant from Liam and later Joel 6. 2002 she sued for puting Stephen’s name on her childrens birth certificate and won By her single action, Mrs. Wood broke the cobweb and forced the actor to position themselves .
Applications of ethnographic approaches to predictive geneticsPUT THE PATIENT IN THE CENTER! • Patient experience maps WITH patients from the first pain until end of treatment • Patient experience far beyond clinic or hospital contact • New services and products created out of the maps in orther to overcome saturated channels and markets
Applications of ethnographic approaches to predictive geneticsINVOLVE PATIENTS IN RESEARCH (and marketing)
Applications of ethnographic approaches to predictive geneticsCROWDSOURCE COMPLEX RESEARCH PROJECTS
Applications of ethnographic approaches to predictive geneticsCREATE PATIENT COMMUNITIES TO FIND THEIR REAL NEEDS AND CO-DESIGN GENETIC TEST SERVICES / CLINICAL SERVICES On line Real
CONCLUSIONS1. Marketing narratives on genetics rise fears and create designer babies narratives2. What patients says is one thing, what they do is another3. Suffering and not baby design is the driver for PGD4. “Science fiction” like marketing narratives are origined because patients are not in the center of research.5. Patients, even disabled, don’t view predictive genetics as baby design or eugenesic
CONCLUSIONS6. Good vs. bad to be stopped as argument: better acceptable and not acceptable7. A close work with patiens in the research phase is important to see what is acceptable or what can be made acceptable, and what services can be co-designed.8. There are tools for patient involvement:• Patient community building• Patient driven / centered research• Crowdsourced research
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