Genetics & Ethics

Definition

• The scientific study of hereditary , how particular qualities or traits are transmitted from parents to the offspring's.

• Genetic technology is an emerging area in medicine , which gives so many hopes for various health related problems of human beings.

Characteristics of Genetic Data

Genetic information is:

• Personal

• Permanent

• Predictive

• Prejudicial

• Pedigree-sensitive

Some Issues Raised by Genetic Testing

1. Risks of being tested

2. Problems posed by public conceptions of genetics

3. Problems with confidentiality & consent

4. ‘Commodifying’ our genes

1. Risks of Being Tested

• Psychological

– If positive for a ‘bad’ mutation:

• Burden of knowing you have the predisposition, particularly if no treatment is available

• Genetic determinism: possible overestimation of likelihood of actually becoming afflicted

– The situation with Huntington’s is not typical

– If negative: • Evidence of ‘survivor guilt’ in some cases

• Possible over-confidence – E.g., thinking you won’t get breast cancer because your test

for BRCA1 & 2 came out OK

More Risks of Being Tested

• Practical – Employment – Life insurance – Health Insurance (more important in US)

• Is it fair for companies to take genetic information into account when making hiring decisions or decisions about whether to insure a person?

• Do these risks justify being paternalistic regarding who is given a genetic test – ‘Traditionally,’ tests have not been given without genetic

counseling, although this is likely to change. – Recall the Rule of Justified Paternalism

2. Popular Beliefs about Genetics

• Genetic Determinism: The common misconception that all genes work like the gene for Huntington’s, i.e., the idea that having a particular gene will guarantee having a particular trait – Huntington’s is an atypical example

– For the most part, having a particular gene mutation will just

increase your chance of developing some trait, not guarantee it.

– Furthermore, most ‘genetic conditions’ are the result of a number of different gene mutations (as well as interactions with the environment)

• We are unlikely to discover ‘the gene makes you good at math’

3. Confidentiality & Consent

• In medical ethics, a great deal of importance is placed on the idea of individual informed consent

– One aspect of this is that your personal health information is not

supposed to be released without your consent

– But the nature of genetic information sometimes gets in the way of this

– Finding out genetic information about you also reveals genetic information about the people you’re related to

GENETIC TECHNOLOGY

• It has evolved from the facts that defects in the gene can produce or deficiencies in the gene products leading to disease or disorders.

Eugenics

• “Improvement of hereditary qualities of a people.” – Eugenics.

• It a social philosophy which advocates the improvement of human hereditary traits through various forms of intervention .

• The word Eugenics derive from the Greek word EU – Good and the suffix gene (Borns) was coined by Sir Francis Galton in 1883.

• The study of improving a species by artificial selection , usually refers to the selective breeding of humans.

• There is often a desire to improve human hereditary by

selecting and increasing the beneficial qualities.

Removing or reducing harmful ones.

Eugenics can be

- Positive

- Negative

Positive and Negative Eugenics

• Positive – deals with the development of a new person through the selection of genotypes from persons possessing exceptional physical and mental qualities.

• Negative – prevention of breeding and reproduction for ‘undesirable’ characteristics:

• Prevention of inter-racial marriage • Sterilization

Ethical issues – Genetics and Eugenics

• Right to decide what may be done to his gene or his children's gene to prevent or treat disease.

• Right to know his genetic abnormalities which are not apparent now but later may become evident in disease many years later?.

• Has the specialist the right to refuse to give the information.

• Has the specialist the right to divulge the information to spouse / third party.

Contd…

• Can the employer ask for the genome mao of the employee and discharge the employee , If found genes which gives possible behavioral characteristics?

• Is it ethical to experiment on embryo or unborn baby?