Trailblazing Genetic Counselors: Episode 14

This is the fourteenth installment in our series, “Trailblazing Genetic Counselors”, in which we highlight genetic counselors who are pioneers in the field. Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling. Genetic counseling is a rapidly growing field offering professionals a wide range of opportunities, which we explore in this series. Learn more on the National Society of Genetic Counselors’ (NSGC) website, aboutgeneticcounselors.com.

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In this episode, we interview international genetic counselors to gain insight on the experience of genetic counselors around the world. 


  Juliana Lee , FHGSA (GC)  @julianamhlee  Consultant Genetic Counselor

Juliana Lee, FHGSA (GC)
@julianamhlee
Consultant Genetic Counselor

What are some of the challenges you face practicing in Malaysia? 

  1. Lack of awareness of genetic counselors' role
    • When I first started practicing in 2004, many healthcare professionals questioned the role of genetic counselors.

    • There were misconceptions that we are using genetic technology to advocate termination of pregnancies especially when the fetus is found to be affected with a genetic disorder.

    • In 2014, the importance of genetic counseling significantly improved, especially among private laboratories and molecular diagnostics companies (start-ups) offering NIPT and panel cancer testing. However, there were limited genetic counselors that were keen to pursue private practice.

  2. Limited career path in public health setting
    • No formal positions for genetic counselors were created in public service despite efforts by clinical genetics professionals to convince government authorities of its importance.

    • Practicing genetic counselors in public health are employed as scientific officers, counselors, and nurses, and not as genetic counselors.

  3. Unequal access to the latest genetic testing 
    • Genetic testing is important to confirm a diagnosis. Some tests are available locally, but most tests are sent to overseas laboratories. Funding to cover the cost of testing is limited. Patients generally have to pay out of pocket.

    • Most genetic services are based at tertiary hospitals, public hospitals, and a cancer research center. Although private healthcare has better access to the latest genetic testing as opposed to public health, they lack genetic professionals in the private hospitals and genetic tests are ordered by doctors not formally trained in genetic counseling or clinical genetics.

How many genetic counselors do you directly work with? 

I work closely with genetic counselors and clinical geneticists when we managed clincial cases together. I also liaise with genetic counselors from overseas laboratories where genetic tests are performed. Despite the current demand for genetic counselors, there is a limited number of certified genetic counselors in Southeast Asia. I am keen to expand my team in the future and create jobs for local genetic counselors interested in working in private genetic counseling ­practices.

Are there enough genetic counselors to meet patient demand? 

No, at present there are only two certified genetic counselors in Malaysia. Three other genetic counselors were trained overseas and have returned to practice in Malaysia since 2014. In total, there are only five genetic counselors in Malaysia for a population of 32 million. One genetic counselor per 6.4 million people.

Do you collaborate with genetic counselors who are not local?

Yes, when there are cases referred for foreigners living in Malaysia that requires genetic testing or requests by family members that require genetic counseling services in their home country, or vice versa. Most genetic counselors I liaise with are from laboratories overseas that performed the genetic tests ordered. Also, when planning for genetic training programs or conferences, we would invite international genetic professionals as speakers.

Are your/patient's resources limited? 

Yes, it is limited especially for local languages. This limitation has improved since 2004 after we helped establish Malaysian Rare Disorders Society (MRDS), the first national patient support group for genetic disorders in Malaysia. MRDS has produced leaflets on ten rare disorders in English and published a book comprised of experiences of patients affected with rare genetic conditions. Currently, with 7,000 rare disorders, we still have limited printed resources and will usually provide them based on requests. They are usually sourced from the internet or shared using resources from other international genetic support groups. Future needs include translation of genetic resources into Malay, Chinese, and Tamil to meet the needs of a multi-lingual society. MRDS Facebook page is a portal for public inquiries and its website, a source of information on rare disorders in Malaysia.

How did you become a genetic counselor? 

Many graduates from Bachelors of Genetics programs usually work in sales for multinational pharmaceutical companies. That was my initial plan until I learned about genetic counseling in my final year. I was really excited that there is a profession that bridges science and people and most importantly makes an impact in their lives. I began my search on the internet about genetic counselors and how to become one.  I compared training programs in the US, UK, and Australia. In 2002, after completing my Bachelors, I traveled for six months and in between that I visited University of Melbourne and spoke to Ms Margaret Sahhar, Program Director for the Graduate Program in Genetic Counseling. Several months later, I decided to apply for the program and began preparing for my application. In the final interview, the program committee suggested that I meet with Professor MK Thong, a clinical geneticist from Malaysia who had just completed a certification in Clinical Genetics in Australia. My main reason was to inquire about future job prospects as a genetic counselor in Malaysia. I managed to meet up with Professor Thong and he encouraged me to come back to Malaysia after my studies. In November 2002, I got accepted into the University of Melbourne's program. I was really happy and excited, but at the same time I found out that my mother was diagnosed with cervical cancer. I wanted to defer my plans and it was a difficult decision to make, but she knew that I was very passionate about genetic counseling and encouraged me to continue my plans to help more people affected by cancer. I was by her side until she recovered from surgery and I then departed for Melbourne. As the first international student from Asia to be accepted into the program, I gathered as much experience as possible from clinical genetic services and the genetic patient organization, Genetic Support Network of Victoria (GSNV). I was also fortunate to have attended clinical observation for a week in Montreal with the assistance of Margaret Sahhar and Jennifer Fitzpatrick, Program Director of MSc in Genetic Counselling at McGill University. Returning home to Kuala Lumpur, I began practice in genetic counseling in April 2004 at University Malaya Medical Centre. For two years I was employed as a counselor and later as a Medical Social Worker providing genetic counseling. With the supervision from Professor MK Thong and Mr Sidek Miko, Head of Medical Social Work Department, I obtained my certification from HGSA and became the first Malaysian to be certified in genetic counseling.

In what projects/research are involved? 

As part of the initiatives of the Professional Society of Genetic Counselors in Asia (PSGCA), we are currently evaluating the role genetic counselors working in various countries across Asia. Apart from my interest in reproductive medicine, I am keen to conduct future research on cultural and religious influences among Asian society affected with genetic conditions.

Do you specialize in any subfield(s)?

I specialize in pediatric genetics, reproductive genetics, and cancer genetics.

Do you serve on any committees/organizations?

I founded my private practice in 2015, where I provide genetic counseling direct to patients (or clients), clinician support, manage inquiries, conduct training and consultancy through Genetic Counselling Asia (GCA). Beginning in 2018, I have expanded my services to other countries that include Singapore, Vietnam and Indonesia. Since 2015, I am serving as Vice President for the Professional Society of Genetic Counselors in Asia (PSGCA),  comprised of genetic counselors working in Asia or originally from Asia. Since 2004, I continue to volunteer with MRDS and presently managing inquiries related to rare disorders on MRDS Facebook page


  Mona Saleh  BSc FHGSA (GC) PhD  @DNAdownunder  Senior Genetic Counselor and Program Leader at  Centre for Genetics Education

Mona Saleh BSc FHGSA (GC) PhD
@DNAdownunder
Senior Genetic Counselor and Program Leader at Centre for Genetics Education

What are some of the challenges you face practicing in Australia? 

I don’t feel there are any real challenges with practicing in Australia. Being a dynamic and growing profession, genetic counseling is still evolving "Down Under" and it is an exciting time to be in the profession. 

How many genetic counselors do you directly work with? 

I have no direct involvement with any genetic counselors in my main role which is education. Despite this, the resources and in particular the website associated with my Centre is one which is widely accessed by genetic counselors all over Australia and indeed internationally. 

Are there enough genetic counselors to meet patient demand? 

Currently, genetic counselors in Australia are mainly placed in multidisciplinary publicly funded teaching hospitals. There are long waiting lists for most of these services so there is definitely a growing need for more genetics services.

Do you collaborate with genetic counselors who are not local? 

Yes, we are often a point of contact for genetic counselors nationally and internationally due to our online presence. Our Centre for Genetics Education covers the area of NSW, an Eastern state of Australia with a population of over 7.5 million people. There are genetic counselors scattered throughout the state who I often work with to deliver genetics education. I have been known to hop on a plane some mornings and fly about 400 km (250 Miles) to co-present a workshop to rural practitioners and fly back home that same day. 

Are your resources limited? 

I am lucky to work in a place which is well resourced with allocated government funding. Our education projects are developed using evidence and with the help of experts and include community consultation.

How did you become a genetic counselor? 

I always had a passion for science and people. I became a genetic counselor in Australia in 1992 when there were only a handful of people working in the profession nationally. It was an exciting time to be involved in an evolving profession. My training was done prior to there being any post-graduate courses available in Australia for genetic counselors. I did tertiary courses in genetics and counseling to gain the MGC equivalency and undertook my full training whilst working in a busy children’s hospital setting. In 2000, I was awarded full certification by The Human Genetics Society of Australasia as a genetic counselor. I continue to be passionate about my job and always place patient wellbeing and support at the center of my work ethic. 

In what projects/research are you involved? 

During my work life, I have been given wonderful opportunities to participate in many research projects. I am particularly proud of my Ph.D. research which was completed in 2014. The project I undertook explored the impact cultural and linguistic diversity has on the process of genetic counseling. More recently, I completed a needs analysis of genetics education needs of nurses, midwives, and allied health professionals. 

I am currently a principal investigator on a project working with a team of Australian Indigenous experts exploring how the Aboriginal and Torres Strait Islander community prefer to talk about family health and wellbeing.

Do you specialize in any subfield(s)?

My specialty is education and cultural impacts on communicating about genetics. 

Do you serve on any committees/organizations?

Yes, I have been very much involved with the professional society for genetics counselors in Australasia, The Australasian Society for Genetic Counsellors. This is a special interest group of the HGSA. 

I have also been a member of patient representative organizations, ethics committees and education committees for health professionals.


Check out all other episodes of our Trailblazing Genetic Counselors series here.

Want to recommend a genetic counselor that deserves the title of Trailblazing Genetic Counselor? Tweet us at @mygenecounsel or email at ellen@mygenecounsel.com!