Ethical AND legal issues in GENETICS

objective 1- introduction. 2-major needs in study of ethics. 3-Ethical Principles in Medicine. 4-The Special Position of Women and Children 4-Overview of Genetic Testing 5-Ethical, Legal and Social issues in genetic testing

introduction Hereditary conditions affect millions of families throughout the world. About 5% of all pregnancies result in the birth of a child with a significant genetic disorder, congenital malformation or disability. An estimated 43% of cases of severe mental retardation ( are caused by single genes or chromosomal abnormalities.In developed nations, totally or partially hereditary conditions account for about 36% to 53% ofpaediatric hospital admissions.In developing nations hereditary conditions account for about 15% to 25% of perinatal and infant mortality.Most non-infectious diseases, which are the major causes of death in developed nations, may have a genetic component

Medical geneticists have several needs in their study of ethics: • To know the major ethical obligations of medical geneticists in the context of the most frequent ethical problems arising in their practice today. • To learn to lead, or to participate in, a process of practical moral deliberation to consider obligations and problems (the process must be grounded in careful examination of the circumstances of each case and respect for all persons with moral standing in the case). • To learn to bring resources in concepts, moral experience, and professional role to bear upon such obligations and problem • To know how to shape policies and practices to address ethical problems and to prevent them, where possible

Ethical Principles in Medicine • Respect for the autonomy of persons: respecting self-determination of individuals and protecting those persons with diminished autonomy. • Beneficence: giving highest priority to the welfare of persons and maximizing benefits to their health. • Non-maleficence: avoiding and preventing harm to persons or, at least, minimizing harm. • Justice: treating persons with fairness and equity and distributing benefits and burdens of health care as fairly as possible in society.

The Special Position of Women and Children Some parties are especially vulnerable and therefore need special consideration. Women usually have less favourable access to economic resources than do men,Women may, therefore, suffer more than men from the effects of some decisions or disclosures because they must depend upon the family unit for support. Women are responsible for much of the daily care of persons with disabilities of genetic origin. In making disclosures about test results and in assisting couples to reach reproductive decisions, professionals should protect the interests of those who may be vulnerable to harm from a hostile environment

Ethical Principles Applied to Genetics Services 1- Fair allocation of public resources to those who most need them (justice 2- Freedom of choice in all matters relevant to genetics. The woman should be the final decisionmaker in reproductive choices (autonomy 3- Voluntary approach necessary in services, including approaches to testing and treatment; avoid coercion by government, society, or health professionals (autonomy

continue 4- Respect for human diversity and for those whose views are in the minority (autonomy, nonmaleficence). 5- Respect for people's basic intelligence, regardless of their knowledge (autonomy 6- Education about genetics for the public, medical and other health professionals, teachers, clergy, and other persons who are sources of religious information (beneficence

Overview of Genetic Testing The term "genetic testing" covers an array of techniques including analysis of human DNA, RNA or protein. In the clinical setting, genetic tests can be performed to: - confirm a suspected diagnosis. - predict the possibility of future illness. - detect the presence of a carrier state in unaffected individuals. predict response to therapy - They are also performed to screen fetuses, newborns or embryos used in vitro fertilization for genetic defects

Ethical, Legal and Social issues in genetic testing To protect patients from additional distress, health care providers should be aware of the relevant ethical, legal, and social issues related to genetics in health care Genetic specialists may be better able to address patient concerns and questions regarding these issues. A brief discussion of the major ELSI (Ethical,Legal,Social) issues related to genetic testing is provided below.

continue - Genetic screening and testing should be voluntary (autonomy) not mandatory. - It is critical that genetic test results are discussed with patients in an understandable manner. it is important that patients understand the extent of the information actually provided from a genetic test.

continue - The results of a genetic test may have implications for a patient’s family members. However, health care providers have obligation to the person being tested not to inform other family members without the permission of the person tested, except in extreme circumstances. If a health professional believes family members may be at risk, the patient may be encouraged to discuss test results with other family members.

continue - If treatment or prevention exists or is available, this should be offered with a minimum of delay.