As these procedures carry risks and benefits, parents should carefully consider and discuss these options with a physician or genetic counselor. Some of these companies may play off consumer fears and offer invalidated or bogus tests, or their laboratories may not be properly certified.
While genetic information may influence one individual to change his or her lifestyle or behavior in order to reduce risk or disease severity, others may choose to respond differently. Personal factors, family values, and community and cultural beliefs will influence responses to these issues.
Providers should take a non-directive stance, especially when the only management option is termination of pregnancy. 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.
The privacy of that information is a major concern to patients: As this publication goes to print, no federal legislation has been passed despite several attempts over the last decade.
Health providers should be sensitive to the fact that some groups may mistrust the use of genetics as a health tool. However, the scope of these protections differs slightly from state to state. For patients considering genetic testing, the following items should be carefully discussed and understood before consent is obtained: This chapter provides a brief overview of some of the major ELSI concerns related to genetic testing.
These issues should be discussed with patients or parents of patients when a genetic test is being considered. Selected References American Medical Association. Referrals to genetic counselors, psychologists, or social workers should be made as needed. Health professionals should be respectful and sensitive to cultural and societal values and work with the patient to define the appropriate course of action for them with respect to genetic testing and follow-up care.
Risk factors for genetic conditions for which preconception or prenatal genetic testing may be considered include advanced maternal age, family history, multiple miscarriages, or drug and alcohol exposure.
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. PMC ] [ PubMed: In general, families are opposed to doctors informing at-risk members without their consent, even in cases where the disease is easily preventable.
This information should be shared with the patient as they consider whether or not testing is appropriate for them. Disclosure of familial genetic information: The duty to inform varies by state, and courts have ruled on differing sides in different cases.
As there is no right or wrong response, health professionals should refrain from judgment and help the patient understand what the test results mean with respect to their own health, available interventions or follow-up, and risks to their family.
If a health professional believes family members may be at risk, the patient may be encouraged to discuss test results with other family members. Genetic specialists may be better able to address patient concerns and questions regarding these issues.
In addition, members of minority communities often fear that genetic information will be used to stigmatize them. However, for some genetic conditions, the utility of genetic test results may be limited if no treatment is available or if the results are inconclusive.
Several concerns have arisen regarding the use and potential misuse of genetic information. A brief discussion of the major ELSI issues related to genetic testing is provided below.
The American Society of Human Genetics suggests that disclosure to at-risk individuals is permissible when the following criteria are met: More than 30 states have legislation prohibiting genetic discrimination.
Am J Med Genet. Because most genetic tests are offered as services, they are not approved by the Food and Drug Administration. Clinical guidelines should be consulted for recommended follow-up care and treatment. Even if a test is not considered to be medically useful, a patient or the family may still gain benefit from testing.
The analytical and clinical validity of a test are generally measured as test specificity, sensitivity, and predictive value. An individual may respond to genetic information on several levels, the individual level, family level, or on a community and society level.
Patients should be cautious when considering direct-to-consumer genetic testing and encouraged to discuss this option with their healthcare professional. 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.
Am J Hum Genet. 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.
Genetic information may differ from other health information because of its long-term implications for an individual and his or her family.
However, genetic tests or any other clinical laboratory test should only be ordered from laboratories certified by Clinical Laboratory Improvement Amendments CLIA.Social Security numbers appeared on her screen. These were not the test records she Legal, Ethical, and Professional Issues in Information Security 91 many of the criminal penalties and procedures associated with criminal and terrorist activities Chapter 8 Ethical, Legal, and Social Issues Over the past decade, many ethical, legal, and social implications (ELSI) associated with genetic testing and research have been raised.
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 paper presents all the pros and cons, legal and social issues in depth knowledge to improve its performance, effectiveness and remove its.
Legal and Ethical Issues in Multimedia: A Technical Perspective Leone Woodcock School of Multimedia and Information Technology Southern Cross University, AUSTRALIA [email protected] Abstract In the multimedia environment, where there is a perception that software the Australian software industry amounts to $ million each year.
Current Multimedia Content Rights Legal Issues - A Top Ten List. Where before the industry turned a blind eye, now the industry polices and seeks relief for digital sampling. More likely to be moral rights issues in the creative area of multimedia content.Download