Genetic testing acceptance is still very low. Genetics arise rational and irrational fears. Research proves that most of those fears are created by scientists and physicians themselves with biosociety narratives. Genetic testing is done for the patients, not with the patients: their real needs and suffering are not included in product design and marketing narratives. Adopting best practices from other medical areas could improve acceptance for genetic testing.
How far patient realities differ from research shows the case of genetic diagnosis applied to fertility treatments.
Scientists and physicians wonder why society fears genetic research and why media coverage focuses on designer babies or gene commerce by powerful corporations if their research and clinical reality is not focused on baby design nor on gene commerce. The truth is that the visions of scientist and physicians are exactly the cause of society’s rejection of genetic research.
Too often narratives coming from science promise a better world free of disease, but they cause the contrary effect: they raise fears among the population about the dangers of genetics and of scientists playing god. Fears that are used then by conservative groups for lobbying against genetic research Media uses those narratives to reinforce those fears appealing to sensation (designer babies, state control over genetics, commercialization of genes) as a sales strategy. Remember, when making or opposing laws, politicians fight in the political arenas with arguments from media, because what they want is media impact.
Science narratives are created by marketing specialists working for laboratories, but they are not created by or with patients. A patient driven research approach as well as co-creation of genetic services with patients would probably create not only focused narratives with a more positive impact in media, society and policy making, but probably they would achieve a better product and service design, as evidence from diverse genetic and pharma companies we will describe in this post shows.
Policy making in genetics- why politicians rule different is science is the same in each country?
In a recent congress on new horizons in genetic diagnosis that took place in Alicante with the presence of the pioneers and great figures of genetic diagnosis (Alan Handyside, Santiago Munné, Dagan Wells or José Horcajadas), there was a debate block dealing with legal aspects of PGD and PCS (preimplantational genetic diagnosis and preconceptional genetic diagnosis). The debate showed clearly, that there were very liberal countries like Spain and very restrictive ones like Germany; where for instance, a physician like Dr. Mathias Bloechle had to denounce himself to the attorney in order to drive attention to the unjust situation of couples forced to have an abortion because the test that collated to fertility, would have avoided it was forbidden.And there is one country where legislation has fostered the world’s leading industry in genetic related to fertility, while, at the same time it has guaranteed highest ethical standards and extreme hard regulations on research. I mean the United Kingdom.
Analyzing the differences between Germany and the UK, we can see that Germany has connected with a “Kant” tradition based on moral imperatives of “good” and “bad”, based on the terrible experience during the Nazi regime.
Instead, the UK has chosen an empiristic approach (connecting to Hume’s tradition) based on what is acceptable and not acceptable for society, according to the recommendation of Mary Warnock’s recommendations when she made the report for the Human Fertilization and Embryology Act of 1990.
The difference between the German and the British approach is not only of philosophical nature, but very practical. Mary Warnock, although philosopher herself, chose a sociological and anthropological point of view. What are people actually doing, not what are narratives telling.
What ethnography tells us: patients are suffering; they do not want designer babies
In fact, patients are not thinking of designer babies. Ethnographic research shows that patients are suffering because they have already lost a child, because they had miscarriages or because they do have a child with a life damned to suffering for a genetic disease like Marfan syndrome or neurofibromatosis.
There is a great research by Sarah Franklin and Celia Roberts on PGD (Born and Made) that shows that there is a big difference on what patients want and need and what marketing sells to them.Franklin and Robert’s research shows four important things:
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.
Marketing is not done around patients’ needs and suffering: Research is done for the patient, not with the patient. Marketing strategies reflect positivist narratives of biosociety and genetic determinism, but they are not built around patient’s needs and suffering. Service design is clinical centric, not patient centric.
Narratives around genetics are invented and polarize each other: Doctors and scientists create a narrative of science fiction around PGD such as “brave new world”, “revolution of genomics”, “a world free of hereditary diseases”. Media react with narratives 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.
The debate is oversimplified and also overrationalized: 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. Futurology narratives are built by marketing departments and by media. Public debate becomes thus oversimplified at media and operationalized at science
Opposition towards genetics grows from not including patients in research
Other ethnographic researches show how a closer patient involvement could reduce strongly opposition to genetic testing. For example, Ruth Fitzgerald’s work at New Zealand’s Organization of Rare Disorders (NZORD) shows and that also on the opponent’s side of PGD things are not as suggested in debate and narratives. Often private attitudes are more open towards science than public ones. Rejection to genetic diagnosis comes due to the fact that being disabled gives patients an identity, an identity that is reinforced when they work in organizations and achieve improvements for their community. Not including patients in research, not acknowledging their identity in marketing narratives (“erase disabilities” means to them “you could have erased me”) is one of the main drivers for opposing genetic testing
Open innovation, user driven research and patient co-creation in genetics
Many fields of medicine have adopted open innovation and patient driven research both as a more accurate access to research data and also in order to multiply talent using platforms. Many private and public hospitals and clinics as well as pharma companies have also adopted patient centered strategies . Both approaches: open innovation/patient driven research and patient experience strategies have one common focus: find out what the real needs of patients in order to design more accurate research for products as well as design services that really fit into patient real needs. No need to say that accurate products and services produce marketing narratives that touch patient’s souls and do not awake fears, phantasies and negative image on science, because they are built out from real situations, not of visions.
A very interesting case of open innovation with patients in genomic research is the platform of the genetic testing company 23 and me. While testing your own genome, you participate in a research program that gathers on this crowdsourced way data of thousands of patients for research purposes. It is true that 23 and me represents a very American approach to genetic testing, choosing the direct to consumer way (notice that they talk about consumers, not patients), instead of getting through physicians and thus have more information about the sociomedical context. It is also true, that the 23 and me test is a very basic one, compared with Recombine that covers over 200 monogenic diseases (49 23 and me), but it is not less true, that the company’s open and patient driven approach has much to do with its acceptance by public and the fact that is not associated with the fears genetics arises.
There are many more interesting examples of patient driven innovation and patient experience centered strategies, especially in the pharmaceutical sector, like the structural genomic consortium (Oxford). In April we are a going to dedicate a full post to co-creation success cases in the pharma sector.