Genetic Diagnosis, ethnography and patient driven research

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