The 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 -
New Horizons In Genetic Diagnosis Alicante, march 18th and 19th 2013
A simple car commercial can tell 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 Capital
Advertising and branding
SCIENCE SOCIAL RELATIONS NARRATIVES
TECHNOLOGY
Mechanics, Thermodynamics
and Chemistry
Manufacturers and Capital Advertising and branding
SCIENCE
Hard facts obtained by experimental research and validated by peers
SOCIAL RELATIONS
…and more • Power • Class • Gender • Flows of goods, capital, people • Values • Symbols • Materials • Resistance • Transgression • ETC. ETC.
The creation and positioning of social groups in relation to other in a given society
NARRATIVES
Transmission of knowledge, values and believes for the reproduction or change of social relations …
NARRATIVES
… by any kind of means
CULTURE = COBWEB OF SHARED MEANINGS
Shared meanings are real and symbolic too
So,
What’s the cobweb of predictive genetics?
Cobweb of predictive genetics PDG/PCS
Patients Brave new world
Marketing
Fears from the past
Brave new world narratives & fears
from present
Industry and employment
Science and research
Diseases that can be avoided
Religous and moral believes:
whatis a human?
Clifford Geertz and Cultures as text
Applying ethnography and thik description to predictive genetics
Methodology: • Participant observation at two PGD centers in the UK • Interviews • Media and policy analysis
“Born and Made” authors Sarah Franklin and Celia Roberts
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 • Politicians work with narratives of one or the other field • Genetic determinism is the shared believe of researchers, physicians, activists, media and politicians
Insight 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 of selection • The driver for PGD is suffering
Ethnography of two clinics: London and Leeds
Insight 3: patients are not in the center of research • Research is done for the patient, not with the patient • Marketing strategies reflect positivist narratives of biosociety and genetic determinism • Marketing strategies are not built around patient’s needs and suffering • Service design is clinical centric, not patient centric
Ethnography of two clinics: London and Leeds
Insight 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 overrationalised at science
Ethnography of two clinics: London and Leeds
Ethnography of patients associations
Methodology: • Participant observation at New Zealand Organization of Rare 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 associations
Insight 2: Activism gives collective identity • Living with disability is almost a military campaign -24 hour care - Dealing with 30-40 government actors - Dealing with the extended family for help • Small victories in individual battles have benefit for all the patient community • Sense of pride and belonging: disease becomes identity • Differences and fights among activists: “my disease worse than yours, I have more right to support”
LAM (Lymphangioleiomyomatosis) charity auction UK
Ethnography of patients associations
Insight 3: Differences private opinions and behaviors vs. public opposition to genetic testing • In depth interviews show that all activists love their children and fight for them • But most of them would never go again through the experience • Many would make a test now if given the possibility • Other lines of conflict: -“what would my (born) children say if I deprived them from life and did not do everything for them?” - versus “what would my (unborn) children say if I brought them to a life of severe suffering?”
Ethnography of patients associations
Insight 4: Ethical and religious believes come rather from experience, than from opinion makers and churches • Attitudes towards genetic testing are deeply rooted in pursue of virtue and “do the right thing” • Opinion leaders and churches do not play a key role • Rather the personal experience of suffering • For some, “you find God in giving yourself to those that are broken” • Others get broken caring for their children • The decision making point are ideas on human dignity and when an embryo 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 PGD
1996 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
Mary Warnock, 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 scruples 3. Aknowledeg opposite views and get
maximum of consense
The politics of Human Embryo Research – Construction of the Human Fertilisation and Embryology Act 1990
A new social contract for bioscience • Obtain the maximum of scientific innovation with the strongest regulation • Socially acceptable and socially unacceptable are categories that bring us 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 genetics
PUT 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 genetics
INVOLVE PATIENTS IN RESEARCH (and marketing)
Applications of ethnographic approaches to predictive genetics
CROWDSOURCE COMPLEX RESEARCH PROJECTS
CREATE PATIENT COMMUNITIES TO FIND THEIR REAL NEEDS AND CO-DESIGN GENETIC TEST SERVICES / CLINICAL SERVICES
On line Real
Applications of ethnographic approaches to predictive genetics
1. Marketing narratives on genetics rise fears and create designer babies narratives
2. What patients says is one thing, what they do is another
3. Suffering and not baby design is the driver for PGD
4. “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
CONCLUSIONS
6. Good vs. bad to be stopped as argument: better acceptable
and not acceptable
7. 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
CONCLUSIONS