Ethical, Legal, and Social Issues

Question 1

What is autonomy?

Answer 1

Values of patient must be respected - freedom of patient to act without interference as long as harm is not done and good consequences are promoted over bad

Question 2

What are the four components of an autonomous decision?

Answer 2

1. Presence of alternatives
2. Decisional competence
3. Adequate info
4. Degree to which decision is voluntary

Question 3

What does nonmaleficence mean? What is the primary underpinning of this?

Answer 3

Do no harm - avoid causing harm. Permit it when unavoidable while ensuring there is a benefit.

Primary underpinning is informed consent

Question 4

What is beneficence? What do you need to avoid when applying this?

Answer 4

Helping others further their important and legitimate interest. What may be in the medical best interest may not be in the psychosocial best interest either.

Avoid: Paternalism - intentionally override patient preference by saying you know what’s better for them

Question 5

What is justice? What is the worry?

Answer 5

Allowing equal and fair access to burdens and benefits of healthcare.

Worry is that genetic information may be used to deprive people of goods and services like insurance

Question 6

What are two uses of genetic information which are not necessarily considered positively by some communities?

Answer 6

1. Ethnicity-based carrier screening programs - possible eugenics
2. Maternal serum screening programs - possible killing or undervaluing of Down syndrome community

Question 7

What are two universally positive genetic information?

Answer 7

1. Newborn screening - for the health of a baby already born

2. Lynch syndrome screening - identifies people who may be at risk for colon cancer

Question 8

What was the eugenics program in the US?

Answer 8

“Healthy birth” - used as justification for sterilizing those who are “imbeciles” or “feebleminded” through the 1970s.

Question 9

What is the current use of genetic information?

Answer 9

Aim is to improve lives of individuals and families rather than improve genetic health of society by providing balanced information

Question 10

What is genetic discrimination?

Answer 10

Treating other differently or depriving them of their rights in the absence of manifest disease, only because of their genetic information. Legislation protects those who are asymptomatic

Question 11

What is the main difference between state and federal laws about what is considered genetic information?

Answer 11

Whether or not family history is included

Question 12

What major law was passed in 2008 for genetic protections and what did it do?

Answer 12

GINA - Genetic Information Nondiscrimination Act
Defined genetic info and testing - includes family history
Prohibits discrimination in health coverage and employment for asymptomatic people

Question 13

What does GINA not do?

Answer 13

Does not apply to life, disability or long-term care insurance (only health insurance + employment)
Does not apply to small companies
Does not stop insurance companies from verifying genetics when making claims
Does not apply to those with manifested disease, or military

Question 14

What is duty to warn? What is ethically in conflict here?

Answer 14

The obligation to warn family members about a genetic condition for which they are at risk

Conflict for physician between beneficence and autonomy

Question 15

When does HIPAA say you can disclose private health information?

Answer 15

1. Health or safety of person is threatened, or safety of public
2. Threat is an imminent, serious threat to an identifiable 3rd party
3. Intervention would avoid harm

Question 16

What does the US bioethics condition say constitutes ethical behavior for disclosure of genetics info?

Answer 16

High likelihood of harm if relative is not warned, patient refuses to inform, the relative can be identified, the benefit outweighs the harm, the disease is manageable in some way, minimum necessary is disclosed and there would be no other way to avoid harm

Question 17

When should the physician discuss disclosure procedures to the patient?

Answer 17

At the time of testing, when collecting informed consent

Question 18

What is informed consent including?

Answer 18

Purpose + description and limitations of test, risks and benefits, what info will be disclosed and what secondary findings will be disclosed when relevant, who will access / handle the info, statement has been reviewed

Question 19

When would a patient be unable to give informed consent?

Answer 19

Cognitive abilities are affected, provider cannot provide info in an unbiased way that the patient can understand, providers do not understand what a truly negative thing is (we are pretty ableist with regards to Down syndrome)

Question 20

For adult onset disorders, when is testing done?

Answer 20

After the patient is an adult, when they can truly consent themselves

Question 21

Why are twins sticky?

Answer 21

If testing for Huntington’s and you have identical twins, the twin has a right to know over the twin who does not want to know

Question 22

What types of secondary findings are placed on the duty to warn list?

Answer 22

Only actionable conditions, regardless of age of patient. Patients must opt out of knowing these secondary findings at the time of testing