Science & Sensitivity: Why Genetic Counselling Matters
When you’re navigating the IVF process, having the right information can make all the difference. At Her Helping Habit, we offer genetic testing to both intended parents and donors so that everyone involved can move forward with greater clarity and confidence. In this post, we’re revisiting an episode of our podcast, Fertility Frontier, where we sat down with genetic counsellor Emma to learn more about her role and why genetic testing plays such an important role in egg donation.
What is IVF?
In vitro fertilization (IVF) is the process of creating an embryo outside of the body. For individuals or couples who experience infertility, or for those who need the help of donor eggs, donor sperm, or a gestational carrier, IVF provides an opportunity to build their family.
What is genetic testing?
Genetic testing helps us better understand the unique DNA blueprint that helps make each of us who we are. By examining specific genes, we can see the biological instructions that influence traits like eye and hair colour, as well as deeper insights into our health.
In the context of your fertility journey, this information can be a powerful tool for identifying genetic markers. These genetic markers can identify inherited disorders such as sickle cell disease and thalassemia, among others, that may affect family planning.
At Her Helping Habit, we recommend testing for several key conditions at a minimum, including Cystic Fibrosis (CFTR gene), Spinal Muscular Atrophy (SMA), Fragile X Syndrome, and hemoglobinopathies, as these conditions can be relatively prevalent in the general population.
What does a genetic counsellor do?
A genetic counsellor is trained in both counselling and genetics, helping individuals, couples, and families better understand how genetics may affect their health and future family planning. As Genetic Counsellor Emma explains, the role involves assessing potential risks of inherited conditions, which, unlike many illnesses, are lifelong and may also affect future children. They also support people as they process and come to terms with difficult genetic diagnoses. Her Helping Habit refers to a genetic counsellor who helps intended parents, donors, and gestational carriers understand how genetics may impact their journey.
While complex and multifaceted, at its core, genetic counselling is about equipping people with the tools and knowledge to make informed decisions, many of which concern family building. A genetic counsellor takes that information and presents it in a way that is kind, rooted in science, and empowering for the clients.
How does genetic testing fit into IVF?
Generally, prenatal testing occurs around the 15-week mark of a pregnancy. However, when using IVF, genetic testing can happen before an embryo is even transferred. This allows families to understand an embryo’s genetic makeup before a pregnancy begins. By identifying chromosomal issues or genetic conditions early, families can avoid the heartbreak of a nonviable pregnancy and make informed choices that prioritize the long-term health of their future child. This also provides the surrogate with peace of mind, ensuring that the journey they are embarking on has the highest possible chance of a healthy, smooth pregnancy.
What makes genetic counselling unique?
Emma discovered genetic counselling the way many people discover their careers—through a guest lecture during her undergraduate studies. She had always loved science, particularly DNA and its role in shaping who we are. At first, she thought she might pursue a career in research or lab work, but she didn’t love the idea of spending most of her time working in isolation.
“A lot of people in my program had a similar background and were considering research, but it felt like something was missing,” Emma says.
One of the things that drew Emma to genetic counselling was the opportunity to see the direct impact of her work on patients’ lives. In research, it can take years to see the results of your work, and because researchers often aren’t working directly with patients, they may not always witness how their discoveries affect people day to day. Genetic counselling, on the other hand, allows practitioners to see the importance of their work every time they meet with a client.
How Genetic Counsellors Convey the Science
Conveying often challenging medical concepts to people is something genetic counsellors excel at. Emma says that, first, she likes to gauge her clients' level of understanding of genetics or a particular genetic condition.
“Some people come in knowing all about their family’s genetic condition and are well-studied on DNA and genes. Others may only remember DNA being mentioned briefly in grade nine science, and that’s kind of it,” explains Emma. Meeting clients at their level of understanding ensures the information is meaningful and relevant to them.
There are many tools genetic counsellors use to explain complex concepts to their clients. Emma stresses the importance of visualizing the roles genes play through pictures and diagrams. She also uses analogies, and her favourite is comparing genetic material to an IKEA manual and how tinkering with the manual, just as tinkering with genes, can entirely change the furniture that results.
The Story of Hope
A story that stays with Emma involves a family with two young sons, both diagnosed with a rare genetic disorder. Despite the heartbreaking news that their children would not live to see their 10th birthdays, the parents remained resilient. They chose to focus on gratitude for the time they shared with their sons while remaining hopeful about growing their family further.
This story underscores the life-changing power of this technology. Even in the face of tragedy, genetic counselling provided this couple with a path forward: offering them the chance to conceive future children without the same genetic condition.
How Her Helping Habit Can Help
At Her Helping Habit, we partner with Natera, a global leader in genetic testing, to offer Horizon expanded carrier screening panels. These tests screen for autosomal recessive and X-linked genetic conditions that could potentially be passed on to children.
The Horizon platform offers several panel sizes. The most comprehensive panels can screen for more than 800 inherited conditions, while smaller panels can focus on just one or a few specific genes. This flexibility allows testing to be tailored to your needs; some people prefer a broad overview, while others may only want to test for a particular condition.
We offer genetic testing with every donor and surrogacy case we manage, as well as à la carte through our fertility consulting and egg donor program. Our clients can access this testing at a fraction of the cost typically charged by many fertility clinics.
Ultimately, genetic screening can provide valuable peace of mind, helping you make more informed decisions when selecting a donor or creating embryos.
If you’d like to learn more, please contact us at admin@herhelpinghabit.com
A practical list of common genes and conditions included across the Horizon panels we offer is attached here.