Advanced Counselling and Ethical Practice for Genetic Counsellors

Module details

Title

Advanced Counselling and Ethical Practice for Genetic Counsellors

Type

Specialist

Module code

SLS426

Credits

15

Requirement

Compulsory

Aim of this module

This module will provide the trainee with opportunities to critically evaluate theories  of advanced counselling and develop their communication skills to support the delivery of high quality, compassionate and patient-centred genetic and genomic counselling. This module builds on the knowledge and skills acquired in the counselling and communication skills module in Year 2, to enable trainees to  develop their skills of critical reflection, including the impact of their actions on the patient and the patient’s family. It will also enable the trainee to explore a range of ethical issues that arise in genetic and genomic counselling practice, e.g. around issues of confidentiality of genetic and genomic information in the family context and the ways in which these may be approached and managed.

Competencies

#	Learning outcome	Competency	Action
# 1	Learning outcome 1	Competency Negotiate effectively with the individual about what is to be achieved in three genetic counselling consultations, taking in to account the concerns and priorities of the individual/couple/family, as well as what can realistically be delivered.	Action View
# 2	Learning outcome 1,2,3,4	Competency Assess an individual’s psychological state and refer as needed.	Action View
# 3	Learning outcome 1,2,3,4	Competency Assess an individual’s social support needs and refer appropriately.	Action View
# 4	Learning outcome 2	Competency Provide information appropriately regarding genetic testing options in a trainee led consultation.	Action View
# 5	Learning outcome 1,2	Competency Elicit an individual’s preference for genetic testing options in a trainee led consultation.	Action View
# 6	Learning outcome 1,2,3	Competency Prepare an individual for the potential outcomes of a diagnostic genetic test in a trainee led consultation.	Action View
# 7	Learning outcome 1,2,3	Competency Prepare an individual for the potential outcomes of a prenatal genetic test in a trainee led consultation.	Action View
# 8	Learning outcome 1,2,3	Competency Prepare an individual for the potential outcomes of a predictive/pre-symptomatic genetic test in a trainee led consultation.	Action View
# 9	Learning outcome 3	Competency Communicate genetic test results appropriately in a trainee-led consultation.	Action View
# 10	Learning outcome 3	Competency Deliver a bad news result following a predictive and/or prenatal test, reflective on the family context and circumstance under supervision.	Action View
# 11	Learning outcome 1,3	Competency Facilitate and support disclosure of genetic information to family members in a trainee led consultation.	Action View
# 12	Learning outcome 1,2,3,4	Competency Reflect on how a client’s beliefs and values have influenced their response to genetic counselling and testing and how you responded to this in a trainee led consultation.	Action View
# 13	Learning outcome 1,4	Competency Identify ethical and/or cultural issues raised in five observed genetic counselling consultations.	Action View
# 14	Learning outcome 4	Competency Utilise genetic counselling supervision to work through a specific ethical issue raised within a trainee-led consultation.	Action View
# 15	Learning outcome 4	Competency Utilise genetic counselling supervision to work through a specific cultural issue raised within a trainee-led consultation	Action View
# 16	Learning outcome 4	Competency Use the multidisciplinary team in the management and resolution of ethical issues raised by clinical cases.	Action View
# 17	Learning outcome 4	Competency Assist in addressing ethical issues raised in three clinical appointments	Action View
# 18	Learning outcome 1,2,3,4	Competency Critical reflection about own attitudes, beliefs and values in relation to disability and culture and how this could influence practice.	Action View

Assessments

You must complete:

• 3 case-based discussion(s)
• 3 of the following DOPS/ OCEs:

Explain the potential outcomes of a genetic test to identify the underlying cause for familial Hypertrophic Cardiomyopathy	DOPS
Identify and use available communication channels to facilitate disclosure of genetic information to at risk family members where family communication is challenging	DOPS
Provide genetic counselling appropriately to a patient who does not speak English	DOPS
Provide genetic counselling appropriately to a patient from a minority ethnic group with visual or hearing impairment	DOPS
Explain the potential outcomes of a genetic test to identify the underlying cause for BRCA12	DOPS
Explain reproductive options available to a patient with an at risk pregnancy including alternative options and legitimacy of each pros benefits and cons risks of the alternatives, taking account of the patients concerns and personal circumstances and uncertainties associated with the available options	OCE
Elicit individual preferences for cancer risk management options	OCE
Communicate bad news BRCA12 genetic test results in an empathic manner	OCE
Facilitate and support disclosure of genetic information to family members in a trainee led consultation	OCE
Explore with a patient their anticipated response to the potential outcomes of a prenatal genetic test	OCE

Learning outcomes

1. Lead on establishing the patient agenda and psychosocial needs in complex genetic and genomic counselling consultations, under the supervision of an experienced Genetic Counsellor (GCRB Registered Genetic Counsellor)
2. Facilitate complex decision making during genetic and genomic counselling consultations.
3. Communicate genetic test results in an empathic manner.
4. Use counselling supervision and multidisciplinary meetings to work through ethical and cultural issues in genomic counselling practice.

Learning outcomes

1. Critically appraise current counselling theories and discuss how these can be applied to genetic and genomic counselling practice.
2. Apply suitable frameworks for the assessment and resolution of ethical and psychosocial dilemmas in clinical genetics practice.
3. Discuss the potential ethical and psychosocial impact of genetic test results, synthesising the published evidence base of patient and family experiences.
4. Critically evaluate the strategies professionals can use to provide support and facilitate ethical decision making in partnership with the patient/family.
5. Evaluate a theoretical framework to help explain family functioning (e.g. family systems theory) and evaluate its relevance to practice in supporting families around a genetic diagnosis or genetic test result.
6. Describe and critically evaluate current best practice guidelines for genetic and genomic testing.
7. Argue and defend specific ethical position(s) in relation to an issue arising from a clinical case in genetic counselling practice.
8. Reflect on how to manage complex ethical issues that arise in genetic and genomic counselling practice.
9. Justify the role of counselling supervision in managing ethically contentious cases.

In a safe learning environment, e.g. a HEI clinical skills centre, trainees will:

1.  Practice applying advanced skills for counselling, showing a positive regard for  the patient and family members with respect to their autonomy. They will use a range of counselling skills to develop further skills in supporting patients and their families to adjust to their genetic risk or status.
2. Practice the use of a range of more advanced counselling skills to support patients in decision making in relation to genetic testing and to address ethical issues raised by genetic
3. Practice applying counselling theory in hypothetical scenarios to enhance understanding of individual people’s responses and develop competent and safe patient
4. Critically reflect upon own professional strengths and limitations. 

Indicative content

Counselling theory and skills

• Theories of psychosocial adjustment
  • Responses to loss (bereavement, loss of imagined future)
  • Responses to uncertainty
• Assessment of psychological status including screening questions/diagnostic criteria for clinical anxiety and depression
• Family impact, Family systems theory, Fostering resilience
• Application of counselling skills and theory for delivery of genetic testing
• Psychology and theory of decision-making

 Ethical principles and frameworks

• Why ethics is important in clinical genetics and genetic counselling
• Ethics as theory vs ethics as governance
• Frameworks for thinking about ethics (e.g. normative ethics, consequentialism, deontology, bioethics)
• Ethical issues in a multi-cultural society; providing genetic counselling to diverse groups; cultural perspectives and contexts in relation to science, genetics and disease
• Ethical issues surrounding the reporting of incidental findings using examples from a pre-natal, childhood and adult setting
• Ethical issues raised by NIPT (e.g. incidental cancer diagnosis picked up in the mother via the pre-natal test); the ‘prenatal exome/genome’

 Professional codes of conduct and Legislation

• Professional Codes of Conduct, e.g. Association of Genetic Nurses and Counsellors (AGNC) Code of Ethics, The Genetic Counsellor Registration Board (GCRB) Code of Conduct, HCPC and their standards of proficiency for clinical practice
• Latest relevant policy on ethics and genomics, e.g. from the British Society of Genetic Medicine (in particular on Consent and Confidentiality best practice) and the Nuffield Council on Bioethics (on the ethical issues surrounding genomic data sharing)
• Latest information about Legislation, Codes of Practice, Caldicott Guardian and Information Commissioner (e.g. to cover Data Protection Act, Mental Capacity Act, Human Tissue Act, Human Fertilisation and Embryology Act, Equality Act (formally the Disability Discrimination Act)
• Privacy, confidentiality and (non) disclosure

 Consent for genetic and genomic testing and data sharing

• Genetic testing: consent and competence (adults and children)
• Consent models used in a health setting (to include ‘broad consent’ used prior to sequencing and dynamic consent as a model for research)
• Prenatal diagnosis, screening and disability issues
• Opportunistic genomic screening for additional information (in addition to the diagnosis) searched for via genomic sequencing technologies
• Patient identifiable data and information, relationship between data and information
• Information system risks to patient safety, electronic and paper copies, safe havens, encryption, secondary uses of data, audit and research
• Secure information exchange between professionals
• ‘Citizen Science’ and the return of data to patients (e.g. raw sequence data)
• Handling requests for information about patients /clients

 Patient support

• Use of resources (including online) for psychological support and referral pathways
• Assessing psychological status to ascertain patients who may benefit from referral
• Critical reflective practice – including how to apply to work-based learning

Activities

For the following activities participate, reflect on and describe the benefits of Genetic Counsellor involvement:

• Attend multidisciplinary clinical meetings where the trainees’ patients are
• Participate in departmental audit and service evaluation activities and present
• Present cases at departmental

Manage a range of genetic and genomic counselling cases covering a disparate range of conditions, e.g. prenatal, dysmorphic child, cancer risk assessment and pre-symptomatic testing. Reflect on the range of counselling approaches used, the nature of information given, identifying where things were done well and what could have been done differently to achieve a better outcome for the patient.

 Prepare and deliver a presentation on psychosocial and/or ethical issues to peers and reflect on this experience.