Chapter 19 Flashcards
ethical, legal, and social issues (ELSI)
FELSI reflects the financial, ethical, legal, and social issues
Eugenics
Defines as working FELSI reflects the financial, ethical, legal, and social issues
Genetic Information and Nondiscrimination Act
-the passage of GINA provided federal protection against genetic discrimination in employment and insurance to almost all Americans. The exceptions are people serving in the military, veterans receiving their health care through the Veteran’s Administration, and people receiving their health care from the Indian Health Service. These groups are protected by other mechanisms
-he passage of GINA provided federal protection against genetic discrimination in employment and insurance to almost all Americans. The exceptions are people serving in the military, veterans receiving their health care through the Veteran’s Administration, and people receiving their health care from the Indian Health Service. These groups are protected by other mechanisms he passage of GINA provided federal protection against genetic discrimination in employment and insurance to almost all Americans. The exceptions are people serving in the military, veterans receiving their health care through the Veteran’s Administration, and people receiving their health care from the Indian Health Service. These groups are protected by other mechanisms.
Genetic information
Includes the results of one’s own genetic tests and those of his or her family members all the way Out to fourth-degree relatives (e.g., your great-great-grandparents or your grandnephews and grandnieces). Any clinical signs of a disease in a family member are also protected, so your employer has no legal right to know if you have a parent or grandparent who has Huntington disease, for example. Information about whether you or any of your family members have requested genetic services, such as participating in a research study that included genetic testing, seeking genetic counseling, or attending genetic education programs, is also protected
duty to warn
the responsibiliry of the health-care provider to tell a patient or a patient’s family members about their genetic risk
Beneficence
intellectual property
the creative products that they develop using their intel- lects,
Gene therapy
occurs when a provider inserts a gene or a modified gene into a patient’s cell(s) to treat or prevent a disease in one of three major ways: Physicians can (1) insert a normal gene copy into the cell, hoping to replace a copy that carries a disease-causing mutation; (2) “tum off” a gene that is not working correctly, or (3) add a gene that will improve the patient’s disease resistance.
Summary
• Genetic information is different from other kinds of health information because it involves family members as well as patients.
• Respecting autonomy is an important guiding principle in caring for a patient’s or family’s genetic health.
• Many Americans report that they are afraid of having genetic testing done because they do not want
to be victims of genetic discrimination.
• Between 3% and 5% of the annual budget of the Human Genome Project was designated for studying the ethical, legal, and social implications of genetic knowledge.
• The American eugenics movement sought to eliminate “defective” people from the reproducing population.
• Fear of the widespread resurgence of eugenics makes some people wary of using advanced reproductive
technologies.
• Preimplantation genetic diagnosis allows parents to screen in vitro fertilized embryos for specific genetic
traits (or sex) and implant those that are less likely to carry the disease.
• On May 21, 2008, the Genetic Information and Nondiscrimination Act (GINA) was signed into law
by then-president George W. Bush.
• GINA provides protection against genetic discrimination in employment and health insurance.
• Sometimes the health-care professional’s duty to warn family members of genetic risk conflicts with the
obligation to maintain the privacy of a patient’s health-care information.
• Although the legal cases presented involved only physicians. the recommendations from governmen-
tal agencies and professional organizations that resulted from them are important for all health-care
professionals.
• Some companies have patented sections of the human genome, claiming this was their intellectual
property.
• When genes are patented, the company that holds the patent can restrict research using those genes
and can charge excessively high rates for genetic tests.
• In June of 2013, the U.S. Supreme Court unanimously concluded that no one could patent isolated
pieces of DNA in its natural, unmodified form.
• Most gene therapy is still experimental and has both promise and challenges.
Why can the “duty to warn” be complicated in considering the genetic care of your patients?
a. The provider’S duty to warn can sometimes conflict with a patient’S right to privacy.
b. The duty to warn is clearly more important than a patient’s autonomy.
c. The ethical principles of beneficence always take precedence over other concerns.
d. HIPAA confirms that health-care providers have a duty to warn.
A
What area(s) are covered under the Genetic Information Nondiscrimination Act (GINA)?
a. Establishing legal guidelines for disclosure of genetic information
b. Providing free medical care to persons with genetic diseases
c. Preventing discrimination in employment and insurance based on a genetic condition
d. Ensuring that all health-care providers receive education in genetics
C
Why is learning about and understanding the history of eugenics important for health-care providers?
a. Eugenics describes the impact of genetically modified organisms in our food supply.
b.Reproductive technologies could function similarly to selective breeding and lead to” designer babies.”
c. Eugenics provides a way to improve genetic health and deter genetic discrimination.
d. Aborting fetuses with disabilities strengthens our society.
B
Gene therapy has used several approaches. Identify the selection that is a gene-therapy approach.
a. Inserting a “super” gene in place of a normal one
b. Turning on a gene that carries a dangerous mutation
c. Adding a group of genes that will prevent all diseases
d. Inactivating a gene that is not functioning as it should
D
Can genes be patented?
a. No, they are naturally occurring and nor the result of an invention.
b. Genes that have been modified cannor be patented.
c. Whether genes can be patented is unclear.
d. Gene patents are the intellectual property of the laboratory that isolated them.
A
