Working Relationship & Ethics

Autonomy

the voluntary freedom to decide without restrictions by others

aka: Respect for persons, and for self‐determination

- provided that the person possesses the mental capacity to understand outcomes and possible unintended consequences

Nonmaleficence

Obligation to minimize harm ("do no harm")

Beneficence

Obligation to maximize benefits ("do good")

Justice

Distributing both those benefits and harms in an equitable manner

Informed consent

To gather autonomous authorization for a medical intervention or research participation

- in either a research or clinical setting

Informed Consent Components

- Study purpose

- Risks/Benefits

- Alternatives to participating in research

- Statement of how confidentiality will be maintained

- Researcher contact information

- Statement that participation is voluntary and participant may withdraw at any time

- Description of how injuries will be handled

Conflict of Interest

A situation in which a financial, professional, and/or personal affiliation has the potential to compromise an educator's judgment and may potentially bias a person's ability to objectively plan, implement, or review educational content

**A conflict of interest may be actual, potential, or perceived

Institutional Review Board

Committee that reviews research protocols to ensure that they are ethical

Common Rule

Outlines criteria and method for IRB review of research involving human participants

Expedited Review

- a study can be reviewed without full committee review

- Research involves no more than minimal risk

- A study that was previously approved but has minor changes

Conditions Required for Waiver of Informed Consent

- No more than minimal risk, research could not reasonably be carried out without a waiver, research involves a common procedure which doesn't typically require consent outside the research context

- The participant signature could pose harm for participants in a study about sensitive subjects

- Linking them to the study

Study must not collect biospecimens

Protected Populations

- Children and neonates

- Pregnant women

- Prisoners

- People with Intellectual Disabilities

Belmont Report - 3 Ethical Principles

Respect for persons (autonomy)

- Recognizes autonomy of individuals and grants protections to protected groups

- People should not be pressured to participate and should provide informed consent

Beneficence

- Researcher should maximize benefits and minimize harm

Justice

- Participants should be treated fairly and the opportunity to participate should be given fairly

Genetic Information Nondiscrimination Act (GINA)

Employers and health insurance companies cannot discriminate or deny coverage based on genetic information

GINA Exceptions

- Companies with <15 people

- Life insurance

- Long term disability insurance

- People using the Indian Health Service

- Military insurance or Federal benefits

HIPAA

Personal Health Information (PHI) is protected for 50 years following someone's death

Ex PHI: Names, Dates (except years), Telephone numbers, Fax numbers, SSN, email address, MRNs

Genetic services performed clinically must follow HIPAA guidelines

**DTC testing companies may have different privacy rules listed in their terms and conditions

Privacy Rule

Disclosure of health info to the deceased person's family members or others involved in the care or payment for care prior to death

Unless there is a clear instruction not to disclose.

Fidelity

keeping one's word

Example:

- Telling your patient you will not disclose the information to a relative. The relative calls and they ask but you do not tell them

- In not breaking confidentiality, you are upholding fidelity

Veracity

honesty and truthfulness

Confidentiality

Based on a medical provider not purposefully disclosing private information without authorization

Privacy

Privacy is about the desire of a patient to keep certain things to themselves so that they are "not known by others."

Genetic Counseling

The process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease

Client/Person Centered

- Nondirectiveness or non-directive approach

- Full control of agenda, pacing, and direction of treatment in hands of patient

- Respect/unconditional positive regard - accepting the client as they are

- Genuineness = counselor is being themselves

- Involves congruence = internal feelings match outward expressions

- Empathy

Client/Person Centered - Assumptions

- People are able to make their own choices

- People are basically, rational beings

- Human self is not compartmentalized

- No one can privately understand one's private world

Reciprocal Engagement Model (REM)

- Genetic information is key

- Relationship is integral to genetic counseling

- Patient autonomy must be supported

- Patients are resilient

- Patient emotions matter

Genetic Counseling Scope of Practice (NSGC)

- Provide expertise in clinical genetics

- Counsel and communicate with patients on matters of clinical genetics

- Provide genetic counseling services in accordance with professional ethics and values

Practice Based Competencies

- Genetics expertise & analysis

- Interpersonal, psychosocial, and counseling skills

- Education

- Professional development & practice

GC Supervision Roles - Teacher/Student

- Primary focus is instruction

- Supervisor is a resource who shares information, skills, and strategies

Activities:

- demonstrating, explaining, & interpreting information that happens before, during, and after session & identify appropriate interventions

GC Supervision Roles - Consultee/Consultant

- Primary focus is to interact collaboratively

- Supervisor encourages student to do self-evaluation

Activities:

- brainstorming possible strategies and interventions

- Supervisor works as a facilitator

GC Supervision Roles - Counselor/Client

- Primary interaction is one of exploration with goal of promoting self-awareness & growth

- Focus on student as a person

- Support is emphasized

- Assists student to recognize developmental tasks and become aware of personal issues that may affect responses to patients

GC Supervision Roles - Evaluation Role

- Primary interaction is one of feedback

- Supervisor acts as a gatekeeper assessing the student's skills

Activities:

- formal & informal assessments, goal setting, & giving & receiving formative and summative feedback

Interviewing Techniques

- assessment

- promoting shared language

- redirecting

- reflecting

- rephrasing

- questioning

- silence