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Genetic Counseling and Disability Communities: A Torn Advocacy

Just Human

As genetic counselors in the field of reproductive medicine, we are called not only to help patients understand what IS possible with technology when they face a genetic risk, but to understand how to unpack the meaning of genetic risk and how THEY want to address it. Our patients often seek wisdom and insight when faced with these difficult questions, particularly when their own experience of disability might be very limited.

That's why it's important as genetic counselors in this space to hear the lived experience of those with disabilities, and to amplify their voices so that our patients get to hear them. To convey a true sense of what living with a condition is---so that patients can make informed decisions.

Stellar intern, Dominique (Nikki) Alexander introduces the work of disability advocate, Dr. Arielle Silverman, in her blog post on the Advocate Genetics blog, "Genetic Counseling and Disability Communities: A Torn Advocacy." 

Fetal Diagnosis Post-Roe

Josephine Johnson

Here's an interesting read from Politico that deserves more attention. . . particularly as it relates to how the Dobbs' decision will limit families who are making heartbreaking choices because of a fetal diagnosis or a known genetic risk. This is something we are all too familiar with at Advocate Genetics, and we will use our voices to advocate for our patients to make their OWN reproductive decisions, as we always have.

If you haven't been in the trenches as a reproductive medicine or prenatal health professional, keep this in mind when discussing policies that affect other people's lives:

"Prenatal screening and diagnosis is fraught and complex. Sometimes a condition is brutally clearcut: The child will die or have a profound disability. Sometimes the trajectory is more uncertain. “‘Severe’ to one individual is different than ‘severe’ to another,” said Jennifer Hoskovec, past president of the National Society of Genetic Counselors. "Doctors, genetic counselors and other trusted advisers (including clergy) can guide parents. Some opt for an abortion; others do not. Many undergo the testing so they can understand and try to prepare themselves for what is to come — emotionally, practically and financially."

Statement on Reproductive Rights

Reproductive Rights

At Advocate Genetics, we are staunch advocates for reproductive rights. We have spent entire careers at this intersection of personal values and reproductive decisions. We have trained, researched, and worked for decades to help people find their self-knowledge to know what to do about reproductive decision-making. We know that we are privileged to get a brief invitation to the most intimate decisions a person can make. We recognize the importance of our role in patients' lives, and that is translated every day in our work, with our focus on patient-centered decision making. 

We stand together with our professional colleagues across genetics, reproductive medicine, and maternal health in denouncing the Supreme Court decision to overturn Roe v. Wade. We oppose all laws that prevent families from making informed reproductive choices, or those that seek to prevent or criminalize healthcare professionals who inform patients of scientific knowledge or reproductive options.

The professional consensus could not be more clear. Please read the joint NSGC, ACMG, and ASHG statement here and the joint maternal health statement here.

Internship at Advocate Genetics

internship

Are you looking at a career in genetic counseling? Our internship program is a unique opportunity in the field of clinical genetics, an opportunity for exceptional prospective genetic counseling students to get a head start in grad school.

As an intern, you will have a front-row seat to the internal workings of a telegenetics company, and the opportunity to grow your clinical genetics knowledge and learn from a diverse group of amazing genetic counselors. 

We support Colorado SB22-224

SB22-224

Advocate Genetics stands in support of the effort led by the U.S. Donor Conceived Council and Senate President Stephen Fenberg, along with a diverse group of donor-conceived people, donors, parents, industry stakeholders, and bipartisan group of Colorado legislators to bring Advocate Genetics stands in support of the effort led by the U.S. Donor Conceived Council and Senate President Stephen Fenberg, along with a diverse group of donor-conceived people, donors, parents, industry stakeholders, and bipartisan group of Colorado legislators to bring this bill into law! Our founder, Gina Davis, will be testifying tomorrow in support of the bill. If you are so inclined, please reach out to legislators in Colorado and ask them to support the bill. 

Epigenetics in Donor Pregnancies?

Epigenetics in donor pregnancies? We get this question all the time at Advocate Genetics! Check out our  blog post  and feel free to share with your clients who have questions about this important topic.

And keep in mind that this is one of the things we often explore during our match consultations for recipients of egg, sperm, and embryo donation. These consultations are designed for intended parents to explain any genetic risks identified with the donor consultation, to review other risks and testing options in pregnancy, and to consider the potential implications of new genetic testing options in their child's life in the future. Patients often benefit from these consultations for informed consent prior to a cycle with a gamete donor.

Everything to Know About Genetic Counseling and Testing

Dr. Aimee of The Egg Whisperer talks with our founder, Gina Davis about how genetic testing and genetic counseling can help fertility patients make informed reproductive decisions, and about the work Gina, Maya, and Jen are doing over at Em-POWER donation to facilitate education and choice in embryo donation.
 

Podcast:   The Egg Whisperer Show Podcast (draimee.org)  

Youtube:   Everything A Fertility Patient Needs to Know About Genetic Counseling and Testing with Gina Davis - YouTube

More Mosaic Embryo Data

Big news in this study! Will make so many patients reconsider their mosaic embryos.

“An elaboration of the results of this trial show that excluding putative mosaic embryos (either with low or moderate degree of mosaicism) drastically reduces cumulative pregnancy rate per cycle started (up to −34%) without improving any clinical outcome measure associated with patient’s safety (e.g., miscarriage, chromosomally abnormal conception).”
 
But we're not sure about the authors' thoughts on moving away from invasive prenatal testing. . . Seems a bit early for the data we've got so far. Talk to one of our genetic counselors for help with decision-making if you are thinking about transferring a mosaic embryo.

EM•POWER's Webinar Series

The Experience of Having Remaining Embryos : In this live 90-minute webinar, the EM•POWER team will focus on the experience of having remaining embryos after IVF and how to make a decision that feels right for each person/family. It's a great resource for both patients and providers!

Becoming a Parent Via Embryo Donation : In this live webinar, the EM•POWER team explores the recipient's experience in embryo donation, from navigating the emotional journey as patients consider their options for fertility treatment to important considerations when considering how they might match with a donor or donors. 

T alking to Children About Embryo Donation : In this live webinar, the EM•POWER team explores different ways to talk with children about embryo donation. We share tools and tips from our family experiences and discuss ways to support children as they shape their own unique narratives.

Expanded Carrier Screening and the Complexity of Implementation

 "Although the American College of Obstetricians and Gynecologists puts forth detailed guidance for deciding which diseases should be included on expanded carrier screening panels, a myriad of challenges arise when analyzing sequencing data that may call into question whether results consistently provide “meaningful information.”'
 
Fertility patients often like the reassurance that comes from a big carrier screening platform before they pursue treatment. And most of the time, it is reassuring. Expanded carrier screening using NGS (next-generation sequencing) gives us better sensitivity. . . but it can also leave us in a pickle when it comes to interpreting rare variants. These are situations when you should see a genetic counselor.

30 Years Since the Human Genome Project Began, What’s Next?

Getting your genome sequenced costs about as much as a new iPhone and generates approximately 200GB of data (that would take up more storage than most iPhones have!). But... what do we do with 200GB of human genome data? Eric Green discusses the future of human genomics in this thought-provoking article. 

If you or your patient has a genetic result that has you scratching your head, remember that genetic counselors are here to help!

Make an appointment with us

Is PGT-A worth it? What are some risk factors for chromosomal disorders? What should I do with my mosaic embryos? We're here to help! We have a team of board-certified genetic counselors who are committed to providing tailored genetic counseling specifically for patients who are seeking fertility treatment!

ASRM Today Podcast: Donor Anonymity with Gina Davis  

How have direct-to-consumer genetic tests and social media impacted gamete donor anonymity? Advocate Genetics founder, Gina Davis, speaks about how donor anonymity has been changing through the years on this episode of the ASRM Today podcast.

How Do Egg Donors Feel About Their Genetic Counseling Appointment?

How do egg donors feel about sharing their family history with a genetic counselor? Of course, family history is an incredible gift for a future child's permanent health history, and reviewing a donor family tree with a genetic counselor can help shape the family history and genetic test results into a useful tool for a child conceived in a donor cycle. But we also know that this appointment may seem intimidating to egg donor candidates and we spend a lot of time thinking about how to best help integrate this important session so that it is informative, thoughtful, empathic, and straightforward for egg donor candidates. We've been asking the egg donors who come to Advocate Genetics for their genetic screening appointment, and here is what they say.

Normalizing Family Diversity and Known Gamete Donation

Representation matters! Shout out to Bless This Mess creators for featuring diverse family forms in authentic character development! Nicole Richie has a cameo in this show and her character and her back-story is simply adorable.

Normalizing life in a diverse family structure is so needed, so that these conversations can move past educating the world about conception stories. Embracing genetic identity no matter how a family comes together. . . we'll get there!