People who work with young children, or in child protective services Lawyers and paralegals Administrators of all types of community programs or their sponsoring organizations Non-professional line staff home health aides, overnight staff at residential facilities and shelters In some states, many of these people -- medical personnel, mental health workers, social workers, educators and others who work with children and youth -- are legally considered mandated reporters. A mandated reporter is required by law to report any suspected instance of child physical or sexual abuse or child neglect. Most formal codes of professional ethics demand such reporting as well.
In order for genetic testing to be used safely and appropriately, these issues should be discussed with patients so that they are aware of risks and benefits. This chapter provides a brief overview of some of the major ELSI concerns related to genetic testing.
Several concerns have arisen regarding the use and potential misuse of genetic information. Genetic information may differ from other health information because of its long-term implications for an individual and his or her family.
Concerns range from the analytical and clinical validity of a genetic test, to potential discrimination by health insurers or employers, to the duty to disclose genetic information to potentially affected family members.
Genetic specialists may be better able to address patient concerns and questions regarding these issues. A brief discussion of the major ELSI issues related to genetic testing is provided below. Results should be released only to those individuals for whom the test recipient has given consent.
The method of communication should be chosen in advance for example by phone, or in person to minimize the likelihood that results will be shared with unauthorized persons or organizations. Patients should be cautious when considering direct-to-consumer genetic testing and encouraged to discuss this option with their healthcare professional.
Some of these companies may play off consumer fears and offer invalidated or bogus tests, or their laboratories may not be properly certified. However, health care providers have an 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.
In general, families are opposed to doctors informing at-risk members without their consent, even in cases where the disease is easily preventable. The duty to inform varies by state, and courts have ruled on differing sides in different cases.
The American Society of Human Genetics suggests that disclosure to at-risk individuals is permissible when the following criteria are met: Attempts to encourage disclosure on the part of the patient have failed Harm is highly likely, serious, imminent, and foreseeable At-risk relatives are identifiable Disease is preventable, or medically accepted standards for treatment or screening are available The harm from failing to disclose outweighs the harm from disclosure 8.
More than 30 states have legislation prohibiting genetic discrimination. However, the scope of these protections differs slightly from state to state. As this publication goes to print, no federal legislation has been passed despite several attempts over the last decade.
In addition, members of minority communities often fear that genetic information will be used to stigmatize them. Health providers should be sensitive to the fact that some groups may mistrust the use of genetics as a health tool. For patients considering genetic testing, the following items should be carefully discussed and understood before consent is obtained: Testing is voluntary Risks, limitations, and benefits of testing or not testing Alternatives to genetic testing Details of the testing process for example, what type of sample is required, accuracy of test, turn-around time, etc.Overview.
Over the past decade, significant advances in genetic testing and technologies have altered the clinical management of individuals.
Advances in genetic testing are also accompanied by a string of new challenges related to the ethical, legal, and social issues (ELSI) for our society. Sep 11, · The Ethical, Legal, and Social Implications (ELSI) program was founded in as an integral part of the Human Genome Project.
The mission of the ELSI program was to identify and address issues raised by genomic research that would affect individuals, families, and society. Over the past decade, many ethical, legal, and social issues (ELSI) associated with genetic testing and research have been raised.
For genetic testing to be used safely and appropriately, these issues should be discussed with patients so they are aware of risks and benefits. Ethical, Legal, and Social Issues Working Group Ethical, legal, and social issues related to health information technology are emerging as central issues.
All are within the purview of AMIA’s Ethical, Legal and Social Issues Working Group, where a range of issues are discussed related to health information technology and systems. The Core of Legal and Ethical Issues While ethical issues are based on the difference between right and wrong, legal issues are based on laws.
Many laws are created with ethical issues in mind in order to protect individual rights and freedoms. Like most mental health and social services providers, social workers face a number of legal and ethical issues throughout their careers.
They must make difficult decisions regarding treatment issues, maintain professional boundaries and develop awareness of value conflicts.