S4E1: Ethical Conflicts

In our final episode of the season, we discuss the counselling issues and interventions raised in episode 4: insurance, and have guest input from insurance expert Dr Jane Tiller. Support us by buying a coffee: https://buymeacoffee.com/gcchatpod Sound engineer: Shaun Allen You will find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website. https://gcchatpodcast.libsyn.com/  You can find us on Instagram, Facebook and Bluesky. Join the discussion with #GCchatpodcast References mentioned in our discussion: Centre for Genetics Education fact sheet: Life Insurance Products and Genetic Testing in Australia. https://www.genetics.edu.au/SitePages/Life-insurance-products-and-genetic-testing-in-Australia.aspx   Clarke & Wallgren-Pettersson (2019). Ethics in genetic counselling. Journal of  Community Genetics https://doi.org/10.1007/s12687-018-0371-7  The DNA Screen study: https://dnascreen.monash.edu/index.html   Human Genetics Society of Australasia Code of Ethics: https://www.hgsa.org.au/common/Uploaded%20files/pdfs/policies,%20position%20statements%20and%20guidelines/genetic%20counselling/Code%20of%20Ethics%20for%20GC.pdf [original]; https://hgsa.org.au/common/Uploaded%20files/pdfs/policies,%20position%20statements%20and%20guidelines/members%20only%20policies/HGSA%20Code%20of%20Ethics-%20Guideline.pdf [updated] Keenan, et al., (2013). How Do Partners Find out About the Risk of Huntington's Disease in Couple Relationships? Journal of Genetic Counseling https://doi.org/10.1007/s10897-012-9562-2  MacLeod et al., (2013). Editorial Committee and Working Group ‘Genetic Testing Counselling’ of the European Huntington Disease Network. Recommendations for the predictive genetic test in Huntington's disease. Clinical Genetics https://doi.org/10.1111/j.1399-0004.2012.01900.x  Reeder, et al.,(2017). Characterizing Clinical Genetic Counselors’ Countertransference Experiences: an Exploratory Study. Journal of Genetic Counseling https://doi.org/10.1007/s10897-016-0063-6 Tiller, et al., (2023). Final Stakeholder Report of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project. Monash University. https://doi.org/10.26180/23564538.v1  Updates regarding the ban on the use of adverse genetic testing results on life insurance: https://treasury.gov.au/consultation/c2025-626785 ; https://ministers.treasury.gov.au/ministers/stephen-jones-2022/media-releases/total-ban-use-adverse-genetic-testing-results-life

In our penultimate episode of the season, we begin by discussing the counselling issues and interventions raised in episode 3: Opening the envelope. We’ll then present this week’s case, where the GC faced a difficult situation in predictive test counselling for an adult-onset condition without any treatments.  Support us by buying a coffee: https://buymeacoffee.com/gcchatpod Sound engineer: Shaun Allen You will find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website. https://gcchatpodcast.libsyn.com/  You can find us on Instagram, Facebook and Bluesky. Join the discussion with #GCchatpodcast References mentioned in our discussion: Crook et al., (2022). Genetic counseling and testing practices for late-onset neurodegenerative disease: A systematic review. Journal of Neurology. https://doi.org/10.1007/s00415-021-10461-5  Guimarães, et al. (2013). What Counts as Effective Genetic Counselling for Presymptomatic Testing in Late-Onset Disorders? A Study of the Consultand’s Perspective. Journal of Genetic Counseling  https://doi.org/10.1007/s10897-012-9561-3  Howard, et al., (2024). Experiences of predictive genetic testing in inherited motor neuron disease: Findings from a qualitative interview study. Journal of Genetic Counseling. https://doi.org/10.1002/jgc4.1904   MacLeod et al., (2013). Editorial Committee and Working Group ‘Genetic Testing Counselling’ of the European Huntington Disease Network. Recommendations for the predictive genetic test in Huntington's disease. Clinical Genetics. https://doi.org/10.1111/j.1399-0004.2012.01900.x Vears, et al., (2020). Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children. Twin Research and Human Genetics. https://doi.org/10.1017/thg.2020.51

In this episode, we begin by discussing the counselling issues and interventions raised in episode 2: Countertransference. We’ll then present this week’s case, where the genetic counsellor experienced their first predictive testing results disclosure in neurogenetics. Support us by buying a coffee: https://buymeacoffee.com/gcchatpod Sound engineer: Shaun Allen You will find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website. https://gcchatpodcast.libsyn.com/  You can find us on Instagram, Facebook and Bluesky. Join the discussion with #GCchatpodcast References mentioned in our discussion: Clark, (2010). Life as a pregnant genetic counselor. Journal of Genetic Counseling https://doi.org/10.1007/s10897-010-9283-3. Clark, (2012). Life as a pregnant genetic counselor: take two. Journal of Genetic Counseling https://doi.org/10.1007/s10897-011-9411-8. Kessler, (1992). Psychological aspects of genetic counseling. VIII. Suffering and countertransference. Journal of Genetic Counseling https://doi.org/10.1007/BF00962826. Menezes et al., (2010). “It’s Challenging on a Personal Level”—Exploring the ‘Lived Experience’ of Australian and Canadian Prenatal Genetic Counselors. Journal of Genetic Counseling https://doi.org/10.1007/s10897-010-9315-z Menezes, (2012). Commentary on “Life as a Pregnant Genetic Counselor: Take Two”. Journal of Genetic Counseling  https://doi.org/10.1007/s10897-011-9413-6 Menezes et al., (2013), “Taking Its Toll”: The Challenges of Working in Fetal Medicine. Birth https://doi.org/10.1111/birt.12029 Porges, (2017). The pocket guide to the polyvagal theory: the transformative power of feeling safe. USA: Norton & Company. Redlinger-Grosse, (2020). Countertransference. In Genetic Counseling Practice (eds B.S. LeRoy, P.M. Veach and N.P. Callanan). https://doi.org/10.1002/9781119529873.ch8 Rietzler, et al. (2018). Perceived Changes to Obstetric Care and the Integration of Personal and Professional Life as a Pregnant Prenatal Genetic Counselor. Journal of Genetic Counseling, https://doi.org/10.1007/s10897-018-0210-3

In this episode, we begin by discussing the counselling issues and interventions raised in episode 1: Ethical Conflicts. We’ll then present this week’s case, where the genetic counsellor encountered countertransference. Support us by buying a coffee: https://buymeacoffee.com/gcchatpod Sound engineer: Shaun Allen You will find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website. https://gcchatpodcast.libsyn.com/  You can find us on Instagram, Facebook and Bluesky. Join the discussion with #GCchatpodcast References mentioned in our discussion: Crook, et al., (2022). Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences. Journal of Genetic Counseling,  https://doi.org/10.1002/jgc4.1591   Crook, et al., (2021). Patient and relative experiences and decision-making about genetic testing and counseling for familial ALS and FTD: A systematic scoping review. Alzheimer Disease & Associated Disorders https://doi.org/10.1097/WAD.0000000000000458   May & Spellecy, (2006). Autonomy, full information and the right not to know. European journal of health law, 6(2), 119-132 World Health Organisation Meeting on Ethical Issues in Medical Genetics (‎1997: Geneva, Switzerland)‎ & WHO Human Genetics Programme. (‎1998)‎. Proposed international guidelines on ethical issues in medical genetics and genetic services: report of WHO meeting on Ethical Issues in Medical Genetics. https://iris.who.int/handle/10665/63910. Vears et al., (2020). Human Genetics Society of Australasia Position Statement: Predictive and Pre-symptomatic Genetic Testing in Adults and Children. Twin Research and Human Genetics.https://doi.org/10.1017/thg.2020.51

Welcome to season 4 of GC Chat Podcast! In this episode, we introduce our first case of the season, which raised several ethical issues for the genetic counsellor. Reflections will follow in our next episode.  Support us by buying a coffee: https://buymeacoffee.com/gcchatpod Sound engineer: Shaun Allen You will find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website. https://gcchatpodcast.libsyn.com/  You can find us on Instagram, Facebook and Bluesky. Join the discussion with #GCchatpodcast References mentioned in our discussion: Gould & Griffin (2017). Karyomapping and how is it improving preimplantation genetics? Expert Rev Mol Diagn. https://doi.org/10.1080/14737159.2017.1325736. Handyside et al., (2010). Karyomapping: a universal method for genome wide analysis of genetic disease based on mapping crossovers between parental haplotypes, Journal of Medical Genetics. https://doi.org/10.1136/jmg.2009.069971 National Health and Medical Research Council (NHMRC) (2017). Ethical guidelines on the use of assisted reproductive technology in clinical practice and research 2017 (updated 2023). Canberra: National Health and Medical Research Council. www.nhmrc.gov.au/guidelines-publications/e79   

We are on the lookout for case presenters for season 4. We can’t do another season without your help so please get in touch! Instructions for case presentation are available on our website: http://www.gcchatpodcast.libsyn.com  Join the discussion on social media with #GCchatpodcast  Sound engineered by Shaun Allen. Content and editing by Ellenore Martin and Ashley Crook

Trigger warning: today’s case reflection episode may be distressing to some listeners as the case involves issues of domestic violence, rape and incest. Please consider this before deciding whether or not to listen. Welcome to the final episode of Season 3 of GC Chat: a genetic counselling podcast.  In this episode, we discuss the counselling issues and interventions raised in episode 3: A heavy burden. References mentioned in our discussion: Chen, L.P., Beck, A.E., Tsuchiya, K.D., Chow, P.M., Mirzaa, G.M., Wiester, R.T., Feldman, K.W. (2015), Institutional Protocol to Manage Consanguinity Detected by Genetic Testing in Pregnancy in a Minor, Pediatrics Mar, 135 (3) e736-e739; DOI: 10.1542/peds.2014-2593  McGuire, A. L., Wang, M. J., & Probst, F. J. (2012). Currents in contemporary bioethics. Identifying consanguinity through routine genomic analysis: reporting requirements. The Journal of Law, Medicine & Ethics, 40(4), 1040–1046. https://doi.org/10.1111/j.1748-720X.2012.00731.xdoi:10.1111/j.1748-720X.2012.00731.x  Patch, C., & Middleton, A. (2018). Genetic counselling in the era of genomic medicine. British Medical Bulletin, 126(1), 27–36. https://doi.org/10.1093/bmb/ldy008 on behalf of the Association of Genetic Nurses and Counsellors (AGNC), Middleton, A., Marks, P., Bruce, A., Protheroe-Davies, L. K., King, C., Claber, O., Houghton, C., Giffney, C., Macleod, R., Dolling, C., Kenwrick, S., Scotcher, D., Hall, G., Patch, C., & Boyes, L. (2017). The role of genetic counsellors in genomic healthcare in the United Kingdom: A statement by the Association of Genetic Nurses and Counsellors. European Journal of Human Genetics, 25(6), 659–661. https://doi.org/10.1038/ejhg.2017.28  Additional support options: https://www.1800respect.org.au/ https://www.rainn.org/national-resources-sexual-assault-survivors-and-their-loved-ones https://lifecentre.uk.com/ You can find our usual suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website.  http://www.gcchatpodcast.libsyn.com #GCchatpodcast Sound engineer: Shaun Allen

**Trigger warning: the new case presented today (from 16:40) may be distressing to some listeners as the case involves issues of domestic violence, rape and incest. Please consider this before deciding whether or not to listen.** Welcome back. We hope you had a nice break.  In this episode, we begin by discussing the counselling issues and interventions raised in episode 2: Adding value. We’ll then present this week’s case, where our guest genetic counsellor discusses a case that weighed heavily for both her and the client. References mentioned in our discussion: Young, M. A., Thompson, K., Lewin, J., & Holland, L. (2020). A framework for youth-friendly genetic counseling. Journal of community genetics, 11(2), 161–170. https://doi.org/10.1007/s12687-019-00439-2  World Health Organization. (2014). Global status reports on violence prevention 2014. Retrieved from. http://www.who.int/violence injury prevention/violence/statusreport/2014/en/     Additional support options: https://www.1800respect.org.au/  https://www.rainn.org/national-resources-sexual-assault-survivors-and-their-loved-ones https://lifecentre.uk.com/  You can find our usual suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website.  http://www.gcchatpodcast.libsyn.com #GCchatpodcast Sound engineer: Shaun Allen

Welcome to season 3 of GC Chat Podcast.  In this episode, we begin by discussing the counselling issues and interventions raised in episode 1: Respecting wishes. We’ll then present this week’s case, where our guest genetic counsellor reflects on how she added value when she was a student. References mentioned in our discussion: May, T., & Spellecy, R. (2006). Autonomy, full information and the right not to know. European journal of health law, 6(2), 119-132 World Health Organisation. Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services, 1997. You can find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website.  http://www.gcchatpodcast.libsyn.com #GCchatpodcast Sound engineer: Shaun Allen

Welcome to season 3 of GC Chat Podcast. In this episode, we introduce our first case of the season, which raised several ethical issues for the genetic counsellor. Reflections will follow in our next episode on 21 December. Join the discussion on social media with #GCchatpodcast You will find suggestions for support, our privacy statement and disclaimer, and more information about topics referenced in our discussion on our website. http://www.gcchatpodcast.libsyn.com *Pseudonyms are used throughout Sound engineer: Shaun Allen