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07 July 2014

Involving the Patient in Research: Lessons from the Genomic Bubble

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We have recently looked at how we can talk about a genomic bubble  inflating the expectations of the public, politicians and patients about the possibilities of genomic medicine. Scientific progress has been spectacular, but it has not been accompanied by parallel medical and economic advances. In a previous post  we described how these expectations are created.  However, in-depth analysis of patients shows that what they really want from genetic medicine is not necessarily what marketing promises.

What the ethnography tells us: patients are suffering, they do not want designer babies

In fact, patients are not thinking about designer babies. Ethnographic research shows that patients are suffering because they have already lost a child, because they had an involuntary termination or because they have a child condemned to a life of suffering by a genetic condition, such as Marfan’s syndrome or neurofibromatosis.

A major ethnographic study into Preimplantation Genetic Diagnostics (PGD) by Sarah Franklin and Celia Roberts (Born and Made) finds that there is a major difference between what patients need and want and what the marketing is selling them. The Roberts and Franklin study has four important findings:

Patients are suffering – they do not want designer babies: Patients come to consultations with a great deal of prior suffering (involuntary terminations, child deaths or living with a handicapped child). They are not seeking to choose phenotypes or make other types of genetic selection. PGD is driven by suffering.

The marketing is not related to the needs of the patient: the scientific research is carried out for the patient, not with the patient. The marketing strategies reflect positivist narratives about a bio-society built on a false genetic determinism (epigenetics clearly shows that genes are not destiny), but not built around the needs of patients or their suffering. Genetic services are designed around clinics, not around the patient.

Genetic narratives are created and polarize opinions. Doctors and scientists are creating science-fiction narratives around PGD such as “a happy world”, “the genomics revolution” and “a world free of hereditary diseases”. The media react to these narratives with others about designer babies and scientists as sorcerer’s apprentices who are going too far. Activists and patients’ associations react by talking about eugenics and scientists playing at being God. And politicians use the narratives of one side or the other to suit their own interests.

The debate is over simplified, and also over rationalized: doctors and researchers are also very uncertain about the future. They are a long way from genetic determinism and the narratives of a bio-society. Scientific progress is paradoxical and contradictory: it is not linear. Futurology narratives are created by marketing departments and the media. The public debate is over simplified in the media, and over rationalized in the scientific realm.

Opposition to genetics arises because patients are not included in the research

Furthermore, other ethnographic research, such as the work of Ruth Fitzgerald with the New Zealand Organization for Rare Disorders (NZORD), finds that the debate and narratives on the side opposed to PGD are also not how they might seem. The private attitudes of anti-genetics activities are often more open to science than their public attitudes. Genetic diagnostics are rejected because having a disability gives patients a specific identity, and this identity is reinforced when they work in organizations and achieve improvements for their community. Not including patients in the research and not recognizing their identity in the commercial narratives (where “eliminating disabilities” could for them mean “they could have eliminated me”) actively promotes opposition to genetic tests.

Open innovation, patient-centric research and co-creation in the field of genetics

Many fields of medicine have adopted open innovation and patient-driven research as ways of achieving more accurate research and multiplying the talent available by using these platforms. Many public and private clinics and hospitals and pharmaceutical companies have also adopted patient-centric strategies.

Both open innovation and patient-centric research have a common approach: to identify the real needs of patients so as to design more precise research into products and services that addresses the real needs of patients. In other words, products and services will be able to reach the market rapidly because they address real needs, and they produce marketing narratives that touch the hearts of patients, rather than provoking fears, fantasies and a negative image of science.

Carlos Bezos

IVF-SPAIN project manager and Recombine Europe manager

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