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Three out of four U.S. adults will develop a health condition that is influenced by multiple genes, such as diabetes, heart disease, and depression, before their children are implanted during in vitro fertilization (IVF). Supports the use of new techniques to estimate likelihood. According to a new poll led by researchers at Harvard Medical School.
The findings, published May 14 in JAMA Network Open, highlight the need for public education and dialogue about the positive and negative impacts of ethically questionable technologies, researchers said. Ta.
This approach, known as polygenic embryo screening, is not yet available in most IVF clinics, but several companies have begun offering such estimates, or risk scores, to assess disease risk. the researchers pointed out.
“Screening for polygenic embryos is largely unregulated in the United States, and without proper background and focused patient education, risk scores can create false expectations,” said first author, International said Remy Farrar, bioethics researcher in the Department of Health and Social Medicine. HMS Blavatnik Institute.
“This study is about geneticists, behavioral scientists, bioethicists, clinicians, and genetic counselors working together to find ways to communicate the limitations to people and understand what polygenic risk scores do and do not offer. “This is a wake-up call that we need to understand,” he said. He said.
Almost three-quarters of respondents said they supported the use of such screenings to assess their future children's risk of developing physical or mental illnesses such as heart disease, diabetes, and depression. However, once people were first presented with various health concerns, the numbers declined. Both individuals and society.
Far fewer respondents approved of using the technology to predict traits unrelated to disease, such as intelligence, height, and skin color.
This result suggests that better educating people about current shortcomings and their implications, including regulation of what companies can promise, will temper optimism and ensure that as these technologies develop, they are scientifically sound, ethical and fair. It is suggested that this will help ensure that the system is implemented in a suitable manner. the authors said.
How accurate are polygenic risk scores?
Until now, IVF patients have chosen which embryos to transfer based on DNA tests that detect chromosomal abnormalities, such as Down syndrome, or diseases caused by mutations in a single gene, such as cystic fibrosis. did it. Such screening, known as preimplantation genetic testing, is well established and widely used.
In contrast, polygenic embryo screening estimates the probability of conditions and traits affected by many genetic variants, each of which slightly increases or decreases risk.
Farrar said experts are divided on how useful the technology will be in the future, but there are clear limits to its accuracy right now. Polygenic conditions arise from different combinations of genes, environment, and behavior in ways that are still not fully understood. The American College of Medical Genetics and Genomics said polygenic embryo screening is not yet suitable for clinical use.
The gap between the current state of the science and the growing availability of such tests forced Farrar and his colleagues to conduct the study. They hope the results will inspire experts to advocate for more informed dialogue and guidance around these technologies.
“The complexity and limitations of polygenic risk scores are difficult to convey,” Farrar said. “But we need to do so to ensure that people understand that there is a high level of uncertainty involved in estimating these risks.”
In terms of numbers
The study was based on the team's interviews with IVF patients and reproductive health professionals. The questions included a list of conditions, characteristics, and potential effects, which participants were asked to consider. The study also revealed that polygenic risk scores may be used solely for information, to prepare for future children or to select embryos for implantation.
The first part of the study surveyed more than 1,400 participants, representing a broad range of the U.S. population in terms of age, gender, and race/ethnicity. It was conducted from March to July 2023.
The findings showed that:
72% of respondents generally approved the use of polygenic embryo screening. 17% were unsure and 11% disapproved. 77% approved of selecting embryos based on risk of certain physical health conditions. 72% approved of selecting embryos based on risk of certain psychiatric health conditions. 36% approved of selecting embryos based on the likelihood of certain behavioral traits. 30% approved of selecting embryos based on the likelihood of certain physical characteristics. 92% expressed at least some concern about polygenic embryo screening leading to false expectations about future children. About half were “very” or “extremely” concerned about negative consequences for individuals or society. 82% said they would be at least somewhat interested in using polygenic embryo screening if they had already undergone IVF. 30% said they would consider undergoing IVF to undergo polygenic embryo screening.
Approval was higher for using risk scores to prepare children than for selecting embryos.
positive and negative
The second part of the survey was conducted from March 2023 to February 2024 with approximately 200 respondents, with a list of potential concerns placed at the beginning or end of the survey.
The concerns include:
Parents who have false expectations for their future children. Eugenic ideas and the promotion of eugenic ideas, unethical efforts to select on a large scale for traits considered desirable. Stigmatizing certain characteristics or conditions that are considered less desirable. Treat embryos like products by selecting them based on favorable genetic probabilities of conditions and traits. Due to the Eurocentric nature of many genetic databases, risk scores are not equally relevant to all ethnicities. There is unequal access to technology due to high costs. Low precision in genetic estimation of a condition or trait. Decreasing human diversity. Nurture Genetics Potential – Parents consciously or unconsciously shape their child's environment based on genetic estimates. Confusion about how to interpret and use test results. Feelings of guilt over the decision if the child develops certain symptoms or characteristics. Disposal of embryos. Feeling pressure to use technology.
In the second survey, respondents who were given the list the first time had lower overall approval (28 percentage points lower) and less uncertainty about polygenic embryo screening than respondents who saw the list last. (24 percentage points higher). The importance of frameworks for education and public conversation.
How to find the right balance
The authors note that some of the findings are nuanced and should not be taken as unwarranted public support or rejection of polygenic embryo screening.
“These findings provide an early glimpse of public opinion given the limited introduction of this technology,” Farrar said. “Future research should investigate how opinions evolve.”
For example, the researchers recommend further research into what it means that a majority of respondents approved of polygenic screening to select embryos, but expressed strong concerns about a slide into eugenics. ing.
The authors also say it is important to consider the role that individual and collective values, such as reproductive freedom and autonomy, play in shaping public attitudes.
The authors conclude that this study highlights the need to inform not only the general public and IVF patients, but also clinicians and genetic counselors, who are concerned about polygenic embryos. We need to be prepared to answer growing questions about potential benefits, current limitations, and concerns. Sifting.
More information: Public attitudes, interests, and concerns regarding polygenic embryo screening, JAMA Network Open (2024). DOI: 10.1001/jamanetworkopen.2024.10832
Magazine information: JAMA Network Open
