Scientific Evidence for Personalized Nutrition: Ethical Implications of Methodological Limitations A. Cecile J.W. Janssens, PhD Research Professor of Epidemiology Department of Epidemiology @cecilejanssens

Same presentation 10 years ago

Different companies, same issues …

Lack of scientific evidence

Not informing major risks still issue Informing participants should also include impact of tested genes on other diseases Commentary reports about two studies: Testing APOE gene to tailor recommendations saturated fat intake Forgot to disclose major risk of Alzheimer’s disease Information: ethical issues around informed consent, privacy, and data sharing (not discussed today)

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What professionals say: limited evidence 2014 2013 All still very premature

What companies claim

What their disclaimers reveal …

… and the Terms of Service Allows applications to be of poor quality and lack scientific basis, and their recommendations to be irrelevant and totally wrong

Ethical principles Medicine Marketing (AMA) Autonomy Beneficence Nonmaleficence Justice Ethical norms: Do no harm Foster trust in marketing Embrace ethical values: Respect, Honesty, Responsibility, Transparency, Fairness, Citizenship

Beneficence Intent of doing good, includes Developing and maintaining skills and knowledge, and continually update Consider individual circumstances of all patients Is commercial offer in interest of customers or company? Insufficient evidence: Many statistically significant gene-diet-outcome associations, some replicated No studies that show how/whether diet can ‘compensate’ unfavorable genetic effects on diet

USPSTF Analytic Framework Glucose test Diet/exercise Obese individuals Pre-diabetes Weight loss Reduced diabetes, CVD, mortality Figure taken from Melnyk et al. Pediatrics 2012;130:e399-e407

USPSTF Analytic Framework DNA testing + survey + lab Personalized nutrition Healthy consumers Personal profiles ??? Figure taken from Melnyk et al. Pediatrics 2012;130:e399-e407

Autonomy Consumer should decide themselves whether testing is useful for them  personal utility  Needs information to make informed decision Yet, Companies use proprietary algorithms to create personalized recommendations Consumers and scientists have no insight in validity Proprietary ‘algorithms’ suggest advanced processing of data, but may well hide lack of knowledge

Proprietary algorithms: how advanced? Personalized diet SNP with small effect Other lab/lifestyle … SNP with small effect Other lab/lifestyle … Simple rule … Recommendation … Personalized combination

Companies may still do same as 10 years ago Arkadianos et al Nutrition Journal 2007

Companies can be transparent about lack of scientific evidence, open about algorithms, and still have a market and a future

Onward Better and more relevant scientific studies More respectful conversation with consumers Genetically personalized nutrition recommendations is still premature, largely lacking appropriate scientific basis Just say it 2005