Ethical issues

1

• Ethical issues
• raised by personalized nutrition
• Ulf Görman
• Ethics
• Lund University, Sweden

2
What is nutrigenomics?

• Nutritional genomics is the investigation of the
  relation between genes, nutrition and health.
• Some of the long-term goals of nutrigenomics are
  to improve health conditions and to prevent
  disease, such as diabetes, obesity,
  cardiovascular diseases and cancer.

3
What is personalized nutrition?

• Adjusting personal dietary advice and personal
  diet to information collected from genetic tests,
  combined with knowledge received from nutritional
  genomics
• Tailoring your diet to your genes

4
Two voices

• Nutrigenomics will take the benefit of the Human
  Genome Project and extend it from the hospital to
  the home.(Andrew Pollack, New York Times, Oct.
  1, 2002)
• This treats food like medicine and society like
  a hospital. (Getting Personal, Food ethics
  council, 2005)

5
What is ethics?

• Ethics is the systematic reflection on the moral
  aspects of life and its conflicts

6
Four widely accepted ethical principles

• AutonomyRespect the right of each individual to
  decide about his or her own life
• BeneficenceStrive to maximize the welfare of
  each individual
• Non-maleficenceAvoid, prevent or at least
  minimize harm
• JusticeStrive for fairness and equity in the
  distribution of benefits and burdens(Beauchamp
  Childress Principles of biomedical ethics, 5.
  Ed., 2001)

7
What is health?

• Health is a state of complete physical, mental
  and social well-being and not merely the absence
  of disease or infirmity.(World Health
  Organisation, 1946)
• A person is healthy in relation to the extent
  that he or she in normal circumstances can
  realize vital goals.(Lennart Nordenfelt On the
  Nature of Health, 2. ed, 1995)

8
What is a good life?

• You reach happiness when you fulfil your wishes.
  
• But if you cannot fulfil the wishes you have,
  then you must adjust your wishes to what you can
  achieve.(Epicurus, 3rd century BCE)

9
What is a good life?

• Life satisfaction a positive cognitive and
  affective response on the part of a subject to
  the conditions or circumstances of her life.
• Life satisfaction does not depend directly on
  the external fulfilment of certain desires or
  preferences, but consists instead in the mental
  acceptance of how things are.(Wayne Sumner
  Welfare, Happiness, and Ethics, 1996)

10

• Western societies today offer exceptional
  possibilities for a good life
• Hygiene Antibiotics Health care Security
  measures Economy Nutritional knowledge
  Knowledge about health factors for living

11
The unhealthy quest for health

• Focus on the quest for health can be a health
  problem in itself, triggered by health propaganda
  and alarm reports
• Healthism the unhealthy strive for
  healthPeople are elevating health to a super
  value, a metaphor for all that is good in life.
  (Robert Crawford)
• Excessive health awareness and expectations
  strong focus on health focus on lifestyle
  choices use of food supplements concern about
  unnatural substances
• To be preoccupied with health is unhealthy.
  (Geoffrey Rose)

12
The unhealthy quest for health

• Medicalization of life (Ivan Illich)Non-medical
  , social problems become identified in medical
  terms
• 10 of the Swedish population medicate
  against high blood pressure 5 of the
  Swedish population medicate against depression

13
Conclusions so far

• Wellbeing is subjective and not directly
  dependent on external factors
• Health is only one of several aspects of
  wellbeing
• Health is also to a large extent subjective
• while there are tendencies in modern society
• to identify wellbeing with external
  circumstances
• to identify wellbeing with health
• to create exaggerated health expectations

14
The role of food in human life

• Food is much more than nutrition
• Cultural identity
• Social identity
• Pleasure
• Relationship
• An important aspect of happiness and wellbeing

15
Swedish national food administration

• Advice for women during pregnancy
• Eat every day
• Fruit and vegetables at every meal
• Carrots and other root vegetables
• Potatoes, rice or pasta
• Bread preferably several times each day
• Milk or chees preferably at breakfast or as a
  light meal
• Meat, chicken, fish
• Eat four meals every day
• Breakfast, lunch, a light meal, and dinner
• Eat only small amount of
• Cakes, sweets, candies, snacks etc.
• You need extra iron
• Blood products, peas, whole grain bread to be
  consumed together with fruits and vegetables
• You need extra calcium
• Milk and cheese
• or cabbage, green beans, shrimps, eggs and
  blackberries

• You dont need extra vitamins
• but if you are anxious about vitamins, you can
  take one multivitamin pill per day
• Fish is good for you, but dont eat these fishes
• more than once a month
• Herring from the Baltic sea
• Wild salmon and trout from lakes or from the
  Baltic sea
• Avoid completely a number of fishes, including
• Fish from lakes, eel, sword fish, fresh or frozen
  tuna, cod liver
• Raw shellfish, raw marinated fish, smoked vacuum
  packed fish
• Avoid
• Liver dishes
• Raw meat
• Soft dessert cheeses like Brie, Camembert,
  Vacherol and Livarot
• Non-pasteurized milk
• More than 3 cups of coffee per day or 45 cups of
  tea
• All so called health products
• Dont smoke or drink alcohol during pregnancy
• http//www.slv.se/templates/SLV_Page.aspx?id12212
  (2005)

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Why did genetically modified food fail?

• In general, public seems to evaluate new
  technologies according to three
  variables Usefulness Risk Moral aspects
• Public considers GMF to be dangerous, useless,
  and morally questionable
• Public considers the use of genetic information
  in police work to be very good (86,9 )(Lennart
  Sjöberg Gene technology in the eyes of the
  public and experts, 2004)

17
Some aspects of personalized nutrition

• Collection of genetic information
• Counselling
• Creation of special food products

18
Collection of genetic information

• General or individually targeted?
• Phenotypic analyses or genetic tests?
• Tests for risk groups or general screening?
• Opportunistic screening?

19
General or individual nutritional advice?

• Targeted advice can induce strong motivation
• non-smoking advice 50 compliance vs. 10
  for general advice
• Phenylketonuria PKU high compliance
• But It is not yet clear whether personalized
  nutrition will work in practice
  precision? robustness of relation between
  genedietdisease?
• Depends on frequency of genes in population
• Social and economic factors are much more
  important than genetics in explaining diseases

20
General or individual nutritional advice?

• Common to find that the burden of ill comes more
  from the many with low risks than the few with
  high risk. (Rose 1992)
• ConclusionsApplication of the principles of
  beneficence justicegt favours general
  strategies for nutritional advicebut alsogt
  individual nutritional advice with clear benefits
  for the individual

21
Phenotypic analyses or genetic tests?

• In monogenetic disorders, knowledge of the
  phenotype is usually sufficient.In complex
  polygenetic diseases (diabetes, hypertension),
  the predictive value of a genetic test is small
  compared to family history or risk factors.This
  may change in the future.
• Recommendations todayUse phenotypic analyses
  whenever adequate less intervention direct
  relation to expression of disease
• Genetic tests should be preferred, when they can
  offer earlier detection, or more precise
  diagnosis

22
Tests for risk groups or general screening?

• Genetic tests clearly beneficial for persons
  belonging to risk groups confirmatory
  diagnosis predictive testing
• This applies to family health problems as
  well as population groups with known genetic
  disorders
• An example The screening programme among
  Eastern (Ashkenazi) Jews.Tay-Sachs disease
  reduced by 90 among new-born babies
• General screening programmes are only justified
  when targeted and the information offered
  is clearly beneficial

23
Opportunistic screening?

• Different considerations freedom of choice
  (respect for autonomy) what values can be
  achieved? (beneficence)
• Most of those who attend screening examination
  are seeking, not the discovery of hidden
  troubles, but rather a reassurance that they have
  no unusual problems. (Rose)
• In the current situation, only very limited
  dietary advice can be given on the basis of
  genetic tests, and to a large extent on an
  experimental basis. (Joost et al, BJN July 2007)
• Recommendations Should only be used when they
  have a clear advantage Preceded and followed by
  adequate information

24
How to handle genetic counselling?

• Traditionally, genetic counselling has been
  regarded as especially sensitive and personal,
  deserving careful treatment in medicine a
  task for medical doctors and groups of other
  persons with a special training
• Tests which are predictive of genetic diseases
  or which serve either to identify the subject as
  a carrier of a gene responsible for a disease or
  to detect a genetic predisposition or
  susceptibility to a disease may be performed only
  for health purposes or for a scientific research
  linked to health purposes and subject to
  appropriate genetic counselling. (Oviedo
  convention, 1997)
• Genetic tests should be considered an integral
  part of the health service production. (European
  commission, 2004)

25
How to handle genetic counselling?

• Does personalized nutrition change this
  situation?
• Some aspects to take into account Many well
  informed health consumers Demand from health
  seekers, interested in personal health Interest
  from the market to sell genetic tests Risk for
  excessive or not well founded marketing
• The ethical dilemma for society respect for
  autonomy protection of citizens
• Recommendations Information and counselling
  should be handled on a personal basis by
  specially trained persons Marketing of genetic
  tests directly sold to the public should be
  discouraged

26
Concerns about commercialisation

• It is inevitable that knowledge in
  nutrigenomics will come into commercial use.
  Commercialisation is the way for new technology
  to reach the public.
• But Commercial marketing may have a tendency
  to create exaggerated hopes. Commercial
  marketing may have a tendency to apply specific
  products to a wider group of consumers than it
  was created for. Normal healthy food may be
  overlooked.
• Little money can be made by selling the fresh
  fruits and vegetables that form the mainstay of
  healthy eating advice." (Food ethics council,
  2005)

27
Will PN contribute to a good life?

• Unavoidable and natural decline of health can
  be redefined as health problems that can be
  successfully avoided, cured or mitigated
• But an exaggerated focus on health can also be a
  threat to a good life

28
The main ethical concerns for PN

• AutonomyThe rights and integrity of each
  individual should be supported in connection with
  the use of PN
• BeneficencePN should be used in order to
  contribute to a good life in line with the values
  of each person involved
• Non-maleficencePN should be used so as to avoid
  or minimize harm
• JusticeThe benefits of PN should be fairly
  distributed