The June 24 decision by the Supreme Court to overturn Roe v. Wade struck close to home for genetic counselors, the medical professionals who are often tasked with advising and consoling prospective parents when ultrasounds or other prenatal tests indicate a threat to their own health or the health of their future child. People seeking abortions based on health concerns during pregnancy are a small percentage of abortion seekers overall, but they are disproportionately affected by the new barrage of restrictions because detecting and confirming a prenatal diagnosis takes time. The abortion drug mifepristone is approved for use by the Food and Drug Administration only through the 10th week of pregnancywell before patients receive the results of genetic testing or anatomy scans. Patients are also likely to find themselves in a bind because of state restrictions on how far along a pregnancy can be when an abortion takes place.
Prenatal counselors must now work around the need for patients to travel out of state for abortion careand somehow try to help patients without the financial means to make these trips. The disparity of access is likely to exacerbate existing health risks associated with being poor and pregnant. Im very worried about maternal mortality, says genetic counselor Shannon Barringer. She has worked for 25 years in the state of Arkansas, where a trigger law that went into effect on June 24 has made abortion illegal even in cases where the fetus is not expected to survive. Barringer also worries that new legislation may make it harder for her to provide that help. I know [legislators are] already working with national organizations to draft language that may interfere with health providers being able to refer out of state, she says.
In fact, existing and proposed laws restricting abortion have become so extreme that they are likely to affect all prenatal patients, not just those who need an abortion. In a recent series of interviews conducted by two graduate students at Sarah Lawrence College, prenatal genetic counselors practicing in states hostile to abortion said that the need to send patients out of state if they were to need an abortion created time pressure that affected many aspects of prenatal care. (The author of this article teaches at Sarah Lawrence.) Some counselors reported that they were rescheduling detailed anatomy scans, typically done between the 20th and 22nd week of pregnancy, to be carried out at 18 or even 16 weeks, despite evidence that earlier scans will miss some fetal anomalies and give less definitive information on others.
A fuller picture of the effect on genetic counseling can be seen in Texas, where these services have operated in a de facto post-Roe world since September 2021, when a law went into effect making all but the earliest abortions illegal. That same law also permits any citizen so inclined to sue anyone aiding or abetting an illegal abortion for a sum up to $10,000. While few of these vigilante suits have reached the courts, the law has succeeded in creating an atmosphere of fear and suspicion. In fact, all four genetic counselors from Texas interviewed by Scientific American for this article said that their institutions required them to speak anonymously. Ive tried consciously, since the law passed, to make the counseling session a safe place for people to go, says one counselor working in Houston. But on the flip side of that, I wonder if I or my genetic counseling colleagues are opening ourselves up for potential lawsuits.
This tension between optimal patient care and self-preservation is not likely to improve anytime soon. New proposals directly target the ability of health professionals to provide guidance to their patients. A bill recently introduced in the South Carolina legislature would make it a felony, with mandatory prison time, to offer information to anyone attempting to obtain an abortion, even if one only directs that person to a Web site. With the threat of legal jeopardy, some genetic counselors may be deterred from even engaging in routine conversations that help determine which types of prenatal tests are best for an individual patient because they could be perceived as raising the question of whether or not that patient wants the option of terminating a pregnancy.
Concerns about liability have also raised questions about whether to limit what information goes into a medical record. Weve debated it, says another Houston counselor. Certain people in our department feel strongly that documentation of a legal procedure out of state should be in the chart so that the patient can get the best possible care, whereas other doctors will say..., Why not avoid that language and just kind of be, you know, abstract about it?
A recent JAMA Health Forum editorial by law professors Kayte Spector-Bagdady and Michelle Mello argues forcefully that medical providers should be aware that not only medical records but their own e-mails may be used by law enforcement officials prosecuting abortion. Doctors are not the only ones who are fearful. Barringer says that because of the current uncertainties, patients do not want details about past pregnancies documented or will not provide her with that information. Barringer adds that she sympathizes with their concerns but worries a lack of medical history could interfere with providing the safest care possible in a future pregnancy.
Already, Barringer says, patients are concerned about sharing information on use of pills that induce an abortionwith or without a prescriptionbecause of the Arkansas law that criminalizes harm to the fetus. New abortion restrictions that include language establishing fetal rights or fetal personhood will exacerbate existing disincentives to open communication. Michele Goodwin, a law professor at the University of California, Irvine, argues in her 2020 book Policing the Womb that there is increasing jeopardy for any pregnant person but particularly for those of color, who have historically been the target of prosecutorial overreach. With both genetic counselors and patients worried about what is safe to say, it will be harder than ever to establish the atmosphere of trust that is a bedrock of good medicine.
Anecdotally, says a Texas genetic counselor, Ive already noticed some patients not wanting to fill out the intake form for pregnancies. And Ive had people share things verbally they dont want to put in the paperwork. Not having the information impedes her ability to do her job. This might mean not knowing about an exposure to a drug, legal or illegal, that could affect fetal development. It might mean not learning about a previous pregnancy that ended in a miscarriage or abortion related to fetal health and therefore being unable to address the risk of the problem recurring.
Another genetic counselor mentions that in one recent case, a prenatal patient with abnormal ultrasound findings came to believe that the problems could have been caused by an abortion she had failed to disclose when she gave her medical history. Only after the patient felt comfortable enough to confide in her could the counselor correct the womans misapprehensions and address her emotional needs. She wanted to know if she caused this, the counselor says. She had a lot of shame and guilt.
As attacks on access to abortion proliferate, genetic counselors worry that prenatal testing itself may become harder to access. Tests such as noninvasive prenatal testing (NIPT), which examines snippets of fetal DNA floating in the maternal bloodstream for missing or added DNA, are extremely popular with patients. But they can be seen as a stepping stone to abortion. In 2012 Republican presidential aspirant Rick Santorum was widely ignored when he said that health insurance companies should not be required to pay for amniocentesis because it was often used to encourage abortion. Ten years later Santorums position, while extreme, now must be taken seriously. I can see that potentially being a problem, Barringer says, noting that Arkansas, like many other states, already prohibits insurance companies from offering policies that cover termination of pregnancy.
Restricting the use of expensive prenatal genetic testing to those who can pay for it out of pocket would effectively implement a lower standard of prenatal care for those who live in abortion-hostile states. Some would lose the opportunity to prevent the birth of a child with a genetic condition. Otherswho would not have terminatedlose the chance to prepare for the birth of a child with special needs and to avoid a long and often arduous search for a diagnosis as evidence of a problem emerges postnatally.
Even for those who can afford it, prenatal genetic counseling may become increasingly hard to find. All four genetic counselors from Texas spoke movingly of an obligation to serve their patients, coupled with the strain of working in an environment in which they could not help them as they once did. In one e-mail to Scientific American, a counselor from Dallas wrote that she worried for days about not providing information to a patient who asked for guidance on finding an abortion clinic out of state before deciding to share what she called a minute amount of information. And then she worried for days afterward about whether what I had said could be construed as aiding or abetting.
Genetic counseling is a limited resource. In a fast growing field, demand continues to outstrip supply. Going forward, it may be hard to find candidates for positions whose fringe benefitsinclude extra emotional burdens and potential legal liability. Barringer, contemplating laws that might restrict her ability to counsel patients as she has done for 25 years, is reluctantly considering what it would mean to turn away from a job she loves. Its making me think, If that comes to fruition here, I dont know if, ethically, Ill be able to continue. If I couldnt help my patients through some of the worst things that human beings can go through..., I honestly dont know what I would do.
Go here to read the rest:
Genetic Counselors Scramble Post- Roe to Provide Routine Pregnancy Services without Being Accused of a Crime - Scientific American
- CRISPR: A game-changing genetic engineering technique - January 4th, 2023
- Genetic Counseling Online Course - School of Medicine Columbia ... - January 4th, 2023
- Genetics & Medicine - Site Guide - NCBI - National Center for ... - December 27th, 2022
- Lilly, ProQR to expand genetic medicine development agreement - December 27th, 2022
- Central Dogma and Genetic Medicine - HHMI BioInteractive - November 24th, 2022
- Social, Environmental, Cognitive, and Genetic Influences on the Use of ... - November 24th, 2022
- Genetically modified food controversies - Wikipedia - October 29th, 2022
- BSGM - The British Society for Genetic Medicine - October 13th, 2022
- Genetic and Genomic Medicine - Nationwide Children's Hospital - October 13th, 2022
- Carrier Screening for Genetic Conditions | ACOG - October 13th, 2022
- New NHS genetic testing service could save thousands of children in England - The Guardian - October 13th, 2022
- Vertex, after setbacks, moves forward with second-generation rare disease drug - BioPharma Dive - October 13th, 2022
- Passage Bio Announces Appointment of William Chou, M.D. as Chief Executive Officer - Yahoo Finance - October 13th, 2022
- Metagenomi Announces Participation in October Investor and Industry Conferences - Business Wire - October 4th, 2022
- NovaSeq X machines will make genetic analysis even faster and cheaper - Mezha.Media - October 4th, 2022
- ORYZON to Give Updates on Corporate Progress in October - BioSpace - October 4th, 2022
- e-therapeutics: Fundraise of 13.5 million - BioSpace - October 4th, 2022
- The inheritance of hope curing genetic heart disease now within grasp - British Heart Foundation - October 4th, 2022
- MS Genetic Counseling | Ohio State College of Medicine - September 16th, 2022
- Genetic Counselor - Mayo Clinic College of Medicine & Science - September 16th, 2022
- UCLA researcher awarded National Academy of Medicine prize for work on genetics of autism - Newswise - September 16th, 2022
- Medical research doesn't serve everyone. This effort hopes to build one of the most diverse health databases ever - Colorado Public Radio - September 16th, 2022
- Precision Medicine Offers Hope for More Targeted Rash Diagnosis and Treatment - Dermatology Times - September 16th, 2022
- Redmond firefighters to 'Fill the Boot' for Muscular Dystrophy Association - KTVZ - September 16th, 2022
- Why Monkeypox Wasnt Another COVID-19 - FiveThirtyEight - September 16th, 2022
- Endometriosis Researchers One Step Closer to Diagnosing Condition With Menstrual Blood - Business Wire - September 16th, 2022
- The Biggest CGT Breakthroughs Through the Eyes of Our 2022 Power List - The Medicine Maker - September 16th, 2022
- Humans evolved with their microbiomes like genes, your gut microbes pass from one generation to the next - The Conversation - September 16th, 2022
- When to Use Targeted Therapy for Iodine-Refractory Thyroid Cancer - Targeted Oncology - September 16th, 2022
- Gracell Biotechnologies to Participate in Three Upcoming Investor Conferences - PR Newswire - September 16th, 2022
- CRISPR is 10: A decade of gene editing refinements presents new ways to address agricultural diseases thought to be incurable - Genetic Literacy... - September 16th, 2022
- Sarepta Therapeutics Announces Recipients of Route 79, The Duchenne Scholarship Program, for ... - The Bakersfield Californian - September 8th, 2022
- 'Record' Gains in Bringing Research Closer to the Patient - Applied Clinical Trials Online - September 8th, 2022
- Metagenomi Announces Participation in September Investor and Industry Conferences - Business Wire - September 8th, 2022
- Sarepta Therapeutics Announces That FDA has Lifted its Clinical Hold on SRP-5051 for the Treatment of Duchenne Muscular Dystrophy - Yahoo Finance - September 8th, 2022
- Studies Reveal Aggressive Prostate Cancer Linked to Ancestral Heritage - DocWire News - September 8th, 2022
- Lonza and Touchlight collaboration will expands customer's access to DNA - Labiotech.eu - September 8th, 2022
- Genetic variants in miR-145 gene are associated with the risk of asthma in Taiwan | Scientific Reports - Nature.com - September 8th, 2022
- Elderly are more affected by COVID brain fog, but 'cognitive rehab' could be an effective treatment - Genetic Literacy Project - September 8th, 2022
- A therapy found to improve cognitive function in patients with Down syndrome - EurekAlert - September 8th, 2022
- Ovid turns to gene therapy startup to restock drug pipeline - BioPharma Dive - August 30th, 2022
- Morris Animal Foundation Golden Retriever Lifetime Study Celebrates 10 Years - PR Newswire - August 30th, 2022
- Immortal jellyfish genes identified that may explain their long lives - New Scientist - August 30th, 2022
- Walk Again Or Stop Blindness. How Gene Therapy Is Revolutionizing Medicine - Nation World News - August 30th, 2022
- ElevateBio and the University of Pittsburgh Announce Creation of Pitt BioForge BioManufacturing Center at Hazelwood Green to Accelerate Cell and Gene... - August 30th, 2022
- Therapeutic Effects of Tretinoin | JIR - Dove Medical Press - August 30th, 2022
- Physical Activity May Have a Stronger Role than Genes in Longevity - Newswise - August 30th, 2022
- BridgeBio, Baylor College of Medicine to Collaborate on Genetic Disease ... - August 22nd, 2022
- New $2.8-million gene therapy becomes most expensive medicine in history - New Atlas - August 22nd, 2022
- Molecular Map Reveals Insights Into the Genetic Drivers of CLL - The ASCO Post - August 22nd, 2022
- Biopharmaceutical Company Expands Clinical Trials On Texas A&M-Developed Angelman Syndrome Treatment - Texas A&M University Today - August 22nd, 2022
- Restrictive abortion laws are limiting the options parents have after receiving genetic test results, experts say - Yahoo News - August 22nd, 2022
- Marketing and Industry Trends Influencing Precision Medicine in 2022 - Healthcare Tech Outlook - August 22nd, 2022
- expert reaction to study investigating use of genetic risk score for prostate cancer in men with lower urinary tract symptoms to predict diagnosis -... - August 22nd, 2022
- As the Smithsonian wraps a genome exhibit, leaders in the field reflect - STAT - August 22nd, 2022
- Why some people suffer more from COVID-19 than others - EurekAlert - August 22nd, 2022
- Q3 2022 Earnings Forecast for LogicBio Therapeutics, Inc. Issued By William Blair (NASDAQ:LOGC) - Defense World - August 22nd, 2022
- Next generation patient avatars: Expanding the possibilities with MicroOrganospheres - EurekAlert - August 22nd, 2022
- Masters Program in Genetic Counseling - Perelman School of Medicine at ... - August 14th, 2022
- Admissions | Master's Program in Human Genetics & Genetic Counseling ... - August 14th, 2022
- The Silver Lining Of Innovation in Genetic Medicine - Pharmaceutical Executive - August 14th, 2022
- Genetics Team Serves as Go-to for Mom of Son With Extremely Rare Disorder - Stanford Medicine Children's Health Blog - Stanford Children's Health - August 14th, 2022
- UI professor receives grant from National Institutes of Health - Iowa Now - August 14th, 2022
- Lilly's Taltz (ixekizumab) Now Available in New, Citrate-Free Formulation to Reduce Injection Site Pain for Improved Patient Experience - PR Newswire - August 14th, 2022
- Research Roundup: 21 Genes Linked to Increased Risk of Alzheimer's and More - BioSpace - August 14th, 2022
- Personalised medicine made in hospitals can revolutionise the way diseases are treated the challenge now will be implementing it - The Conversation... - August 14th, 2022
- Beyond Paxlovid for covid-19: The hunt for better covid medications - Grid - August 14th, 2022
- PVM to Play Role in Research on New Patent-pending Method to Mass-produce Antitumor Cells to Treat Blood Diseases and Cancer - Purdue University - August 14th, 2022
- Analyzing Kiromic BioPharma (NASDAQ:KRBP) and LogicBio Therapeutics (NASDAQ:LOGC) - Defense World - August 14th, 2022
- Corporate America's Abortion Radicalism - The American Conservative - August 14th, 2022
- A team of Oxford and Mexican researchers want to diversify genomic databases. Can they end 'parachute science,' too? - STAT - August 14th, 2022
- The aging heart accumulates mutations while losing the ability to repair them - EurekAlert - August 14th, 2022
- Generation Bio Reports Business Highlights and Second Quarter 2022 Financial Results - GuruFocus.com - August 5th, 2022
- Population Genetic Testing: Save Lives And Money, While Avoiding Financial Toxicity - Forbes - August 5th, 2022
- GENERATION BIO CO. Management's Discussion and Analysis of Financial Condition and Results of Operations. (form 10-Q) - Marketscreener.com - August 5th, 2022
- Sangamo Therapeutics Reports Recent Business Highlights and Second Quarter 2022 Financial Results - Yahoo Finance - August 5th, 2022
- Researchers discover one of the largest known bacteria-to-animal gene transfer inside a fruit fly - EurekAlert - August 5th, 2022
- Intellia Therapeutics Announces Second Quarter 2022 Financial Results and Highlights Recent Company Progress - Yahoo Finance - August 5th, 2022
- Medical Student's Crime In Cipolletti: They Found A Man's DNA Under The Victim's Thumb - Nation World News - August 5th, 2022
- A new era: After winding path and safety scares, gene therapy enters the clinic - Sydney Morning Herald - August 5th, 2022