Genetic Counseling Pirnicples Flashcards
According to ACMG guidelines, what points should be considered when assessing the potential benefits and harms about genetic testing in children and adolescents?
Assessment of the significance of the potential benefits and harms of genetic testing should include the following:
Timely medical and substantial psychosocial benefits as a result of testing
Testing should be deferred if medical or psychosocial benefits will not accrue until adulthood (ex. carrier screening, adult-onset disorders)
If balance of benefits and harms is uncertain, the decision of competent adolescents and their families should be respected
Testing should be discouraged when the provider determines that the potential harms of testing a child outweighs the benefits
What is a code of ethics and what four relationships
are the NSGC Code of Ethics based upon?
code of ethics – statement of beliefs and guidelines for professional behavior
The NSGC Code of Ethics is based on the following relationships:
Genetic counselors themselves
Genetic counselors and their clients
Genetic counselors and their colleagues
Genetic counselors and society
What is included in the NSGC code of ethics
for “genetic counselors themselves?”
Genetic counselors value competence, integrity, veracity, dignity, and self-respect in themselves as well as in each other. Genetic counselors strive to:
Seek out and acquire sufficient and relevant information required for any given situation
Continue their education and training
Keep abreast of current standards of practice
Recognize the limits of their own knowledge, expertise, and therefore competence in any given situation
Accurately represent their experience, competence, and credentials, including training and academic degrees
Acknowledge and disclose circumstances that may result in a real or perceived conflict of interest
Avoid relationships and activities that interfere with professional judgment or objectivity
Be responsible for their own physical and emotional health as it impacts on their professional performance
What is included in the NSGC code of ethics
for “genetic counselors and their clients?”
The counselor-client relationship is based on values of care and respect for the client’s autonomy, individuality, welfare, and freedom. The primary concern of genetic counselors is the interests of their clients. Genetic counselors strive to:
Serve those who seek services regardless of personal or external interests or biases
Clarify and define their professional role(s) and relationships with clients, and provide an accurate description of their services
Respect their clients’ beliefs, inclinations, circumstances, feelings, family relationships, and cultural traditions
Enable their clients to make informed decisions, free of coercion, by providing or illuminating the necessary facts, and clarifying the alternatives and anticipated consequences
Refer clients to other qualified professionals when unable to support a client
Maintain information received from clients as confidential, unless released by the client or disclosure is required by law
Avoid the exploitation of their clients for personal advantage, profit, or interest
What is included in the NSGC code of ethics for
“genetic counselors and their colleagues?”
The genetic counselor’s relationship with other genetic counselors, students, and other health professionals are based on mutual respect, caring, cooperation, and support. Genetic counselors strive to:
Share their knowledge and provide mentorship and guidance for the professional development of other genetic counselors, students, and colleagues
Respect and value the knowledge, perspectives, contributions, and areas of competence of colleagues and students, and collaborate with them in providing the highest quality of service
Encourage ethical behavior of colleagues. Assure that individuals under their supervision undertake responsibilities that are commensurate with their knowledge, experience, and training
Maintain appropriate limits to avoid the potential for exploitation in relationships with students and colleagues
What is included in the NSGC code of ethics for
“genetic counselors and society?”
The relationships of genetic counselors with society include interest and participation in activities that have the purpose of promoting the well-being of society and access to health care. Genetic counselors strive to:
Keep abreast of societal developments that may endanger the physical and psychological health of individuals
Promote policies that aim to prevent discrimination
Oppose the use of genetic information as the basis for discrimination
Participate in activities necessary to bring about socially responsible change
Serve as a source of reliable information and expert opinion for policymakers and public officials
Keep the public informed and educated about the impact on society of new technological and scientific advances and the possible changes in society that may result from the application of these findings
Support policies that assure ethically responsible research
Adhere to laws and regulations of society – when such laws are in conflict with principles of the profession, work toward change that will benefit public interest
Define rephrasing and provide an example.
Rephrasing – stating in your own words what the client has just told you
- –valuable tool to demonstrate to the client that they are being listened to
- –helps to ensure that you have understood what they intended to convey
Example: A mother of two children who is now pregnant by a new partner states “I just don’t know if he’s going to disappear or what.” The counselor may reply with something similar to “So you don’t think he’s very committed to the relationship?”
Define reflecting and provide an example.
Reflecting – repeating the last phrase of a client’s statement in the form of a question to encourage further exploration of the topic
—Used to maintain the direction along which the conversation is going
—Encourages the client to amplify her thoughts and ideas in a way that more clearly identifies the significance of her feelings or observations
Gives the counselor more information regarding the basis for the client’s thoughts and beliefs, so that assumptions will not be made
Example: The client states “Well, since my nephew was diagnosed with muscular dystrophy, my husband just seems scared about another pregnancy.” The counselor responds, “He seems scared?” The client elaborates by saying “Well, I guess we’re both a little scared, you know, that it might happen to us.”
Define redirecting and provide an example.
redirecting – statements that function to direct the introduction and flow of topics, or to refocus the discussion when the client has gone off on a tangent
—used to manage the rate of information exchange
Example: The counselor may say “That’s an important issue, but first I’d like us to go back to…” or “Before moving on, let me ask you a little more about…”
Define the following: gap, omission, inconsistency.
A counselor’s recognition of missing or discrepant information in a client’s narrative can indicate a subject area that might benefit from further discussion.
gap – recognition by a counselor that an issue typically associated with a specific genetic situation as not been raised
omission – circumstance in which the client neglects to include relevant information in their personal history or narrative
inconsistency – discrepancy between what the client says at different points during the session or between what the client says and then does
Discuss how to approach specific psychosocial issues
when counseling a consanguineous couple.
Psychosocial issues and genetic counseling of consanguineous couples:
Ascertain the client’s preconceived notion of the nature and magnitude of genetic risks to their offspring
- if from a culture where consanguinity is uncommon, provide cultural or historical examples to “normalize” their situation
Discuss perceived or real attitudes and fears of family and friends regarding their relationship
- provide a follow-up patient/family letter to clarify misconceptions
Refer incestuous unions, particularly those involving a minor, to specialized therapists and support services
- Be respectful of client beliefs and cultural traditions when counseling a couple from a population where consanguineous unions are common and preferred
Discuss the ethics of genetic testing offspring of incestuous or consanguineous unions who are placed for adoption.
When a child of an incestuous or consanguineous union is placed for adoption:
Special consideration for genetic testing should not be given
Testing is only considered appropriate if such testing would be performed on a child “of a similar age for the purpose of diagnosis or of identifying appropriate prevention strategies”
Testing should be limited to conditions that manifest during childhood or conditions with preventative measures or therapies applied in childhood
Prospective parents should receive genetic counseling regarding the nature and probability of the risks for adverse outcomes, particularly if the child was the result of an incestuous union
Genetic Information Non-discrimination Act
●Bars private insurance companies and employers from discriminating against someone on the basis of genetic information
●Insurance companies cannot deny coverage based on genetic information
●Employers cannot making hiring, firing, or promotion decisions based on genetic information
●Prevents employers for accessing, requesting, or requiring genetic information from employees
●Applies to any company with 15 or more employees including state and federal government
What does GINA not apply to?
● DOES NOT APPLY TO MILITARY INSURANCE –Active military and veterans are covered under government insurance that GINA does not apply to
● Does not apply to individuals using the Indian Health Service (for Native Americans living on reservations)
● Does not apply to federal employees enrolled in the Federal Employees Health Benefits Program
● Does not apply to employers with fewer than 15 employees
● DOES NOT APPLY TO PRE-EXISTING CONDITIONS even if they are genetic
● DOES NOT APPLY TO LIFE INSURANCE
oLife insurance cannot drop you/ask for genetic information if you are already on a plan, but they are allowed to ask for this information when you sign up for a new plan and may deny you or charge you higher rates based on this information
What constitutes genetic information?
●Genetic test results of an individual or their family
●Family medical history
●Requests for and/or receipts of genetic services by an individual or their family
●Genetic information about a fetus carried by an individual or their family or of an embryo legally held by an individual or their family
