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Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
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7

Participatory Public Engagement Around Reproductive Science Advances

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

This chapter summarizes discussions on how scientists and clinicians can engage the public on reproductive science advances. This final panel was moderated by Melissa Simon of Northwestern University, who said, “if we do not center our patients, our community voices, and really have that situational awareness,” then these scientific advances will be “futile, because at the end of the day we want to advance health for everyone and have opportunities for everyone.”

OPENING PERSPECTIVES

Community Engagement and Developing ART

As a reproductive endocrinologist who performs community-engaged research, Erica Marsh of the University of Michigan offered her perspective on leveraging community engagement1 to shape research agendas and ongoing ART development. Marsh shared questions that she uses to guide how she thinks about research, clinical work, and the challenges and opportunities in health systems.

  • For whom were our health systems designed?
  • For whom were they not designed?
  • Who is going to benefit from a treatment?
  • Which populations are included in the normative base for health care processes and/or data?
  • For which population is an unmet need defined?
  • Who needs a given treatment, and how does society define “needs”?

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1 Marsh noted that she works in community engagement, not public engagement. Public engagement focuses on galvanizing the public’s participatory action to influence policy making, whereas community engagement is the “process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people” (CDC, 1997). Landecker added that public engagement, at its best, is informed by community engagement.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
  • Is the care provided equitable?
  • In our current roles, how can society work toward health equity?

By engaging stakeholders early and considering their perspectives often, community engagement forces those in power to tackle issues that may otherwise fail to come to light until after a finished product is unveiled to the public, Marsh explained. She described how considering both one’s own and stakeholders’ perspectives is central to effective community engagement.2 Positionality, she explained, describes how a person’s social and political context in terms of age, race, ethnicity, class, gender, sexuality, and ability status influences how they understand the world. Marsh said that “positionality challenges us to own who we are, what we do, and why we do it.” Acknowledging positionality encourages situational awareness, pushing researchers to ask whether everyone has been included in conversations about nascent technologies. Furthermore, community engagement helps scientists and clinicians become more aware of how their privilege—especially regarding health literacy—impacts their work and approach to science, she continued.

Diving deeper into community engagement as it relates to reproductive health issues, Marsh challenged participants to question their notions of who wants to get pregnant, who is allowed to get pregnant, and who society approves of becoming a parent. These conversations need to start now, Marsh said, with “the hope—not of judgment—but of convincing, of sharing, of educating, of informing, of exchanging.” She went on to ask participants to reflect on their ideas about who knows the definition of infertility, who knows that infertility is a medical diagnosis that is treatable, and who is referred to specialists.3 Last, Marsh invited participants to consider, “Who can get an appointment [with a specialist]? Who engages in fertility treatment? Who engages in IVF? Who gets pregnant ultimately? Who has a safe pregnancy? Who has a live birth? And really, most importantly, who feels seen, safe and centered along the journey?”

As conversations begin to identify what situation could present an “ideal” first-in-human candidate for IVG, questions about “who” are important, Marsh continued. Referencing the discussions from the

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2 A recent community engagement framework developed for a National Academies consensus study did not incorporate positionality (Aguilar-Gaxiola et al., 2022).

3 Marsh said that Black and Hispanic patients often fail to receive referrals by their OB/GYNS or primary care physicians. They may be told by their other doctors that Black or Hispanic women do not experience infertility and to just keep trying. Dr. Marsh also noted that many providers may not know that trans men or trans women can be referred to specialists for fertility care. Family-building options may not be ideal, but they can be offered, she said.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

breakout group on Pathways to Clinical Trials (see Chapter 6), she said that although a theoretical use of IVG to support parenthood for a cancer patient may be a sympathetic use case, “where do we stop? Is it a cancer patient with blond hair? Is it a cancer patient with blond hair and blue eyes who’s cisgender? Is it a cancer patient who is blond haired, blue-eyed, cisgender, and very articulate, well educated?” These conversations about who is sympathetic must be conducted with extreme care, she continued, because they have real implications and may reflect and perpetuate harmful societal biases. The first few in-human cases will impact how the public views this treatment, just as it has for IVF, Marsh explained. In the United States, she said, IVF has largely been designed for White, heterosexual couples who are upper middle to upper class. To move toward a more equitable future for the next class of ART, Marsh said that scientists and clinicians need to be intentional as they discuss for whom IVG is intended and what the role of the public and community should be in its development.

Views, Expectations, and Concerns on IVG: The Perspectives of Potential Users

Hannah Landecker of the University of California, Los Angeles, discussed her ongoing NIH-funded project examining perspectives on IVG elicited from potential users, including those who are LGBTQ+ or experiencing infertility. The study aims to engage a diverse array of prospective stakeholders, from the scientists involved to the interested general public, who could be impacted by IVG if it were ever available clinically.

Landecker began by emphasizing the importance of “co-learn[ing]” and “occupy[ing] the position of listener when one is a researcher” engaging in a diverse range of interlocutors. She described how her team approaches the work without presuming that they know the right questions to ask about IVG or how to recruit a diverse range of voices. Before developing recruitment materials and the focus group discussion protocols, Landecker and her team spoke to and learned from potentially affected communities and community-engagement researchers to identify relevant areas of interest and concern surrounding ARTs from these perspectives (see Figure 7-1).

Landecker noted that communicating science is an iterative process that requires learning from the public. When discussing IVG with study participants (see Figure 7-2), Landecker and her colleagues outline a variety of potential scenarios. “Giving these different possibilities is one technique for sharing the science,” she said. Researchers then listen carefully to participants’ opinions and questions, as these questions may be just as illuminating as their answers.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Image
FIGURE 7-1 Recruitment fliers for focus group discussions on in vitro gametogenesis.
SOURCES: Presented by Landecker, April 21, 2023. Materials designed by Anne Le Goff with images by Amisha Gadani.
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Image
FIGURE 7-2 Schematics used to communicate IVG to study participants.
SOURCES: Presented by Landecker, April 21, 2023. Materials designed by Anne Le Goff with images by Amisha Gadani.
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

In addition to the focus group discussions, Landecker and her colleagues conduct interviews as part of an ethnographic4 study of scientists engaged in IVG research. The results will help identify what scientists perceive as the most pressing ethical and social issues and how they converge with or differ from the views of public constituencies. Ultimately, these findings “will be an important tool for reflexivity for the scientific and policy communities” for understanding how “people situated in different positions economically, ethically, in terms of gender identity” consider IVG-related issues, language, and questions, she said.

Throughout the day, several speakers and attendees commented on the importance of patient voices. In acknowledgment of this need, Landecker shared quotes from individuals in her study examining perspectives of potential users and other stakeholders. As participants learned about IVG, they talked about scenarios in which it could apply to individuals in a position similar to their own and offered their own perspectives on how it might matter. The selected quotes highlighted emerging themes such as access, safety, gene editing, and evolving notions on kinship and family building. For instance, a participant expressed interest in how IVG, unlike IVF, could enable her to conceive a child without depriving herself of medications she takes to manage her disability. Many participants highlighted the suffering inflicted by IVF and how IVG could sidestep these issues, with one person noting that “if I could avoid [the pain of egg retrievals] and just have some biopsy taken from my skin instead, that would be amazing.” Participants from the LGBTQ community discussed the world of possibilities IVG could provide to themselves and their children. Landecker noted that workshop speakers referenced a preference for having genetically related children as a potential underlying reason for interest in IVG but that voices from her study seem to focus more on its utility for family formation to create a sense of “kinship.”

“At this stage in the process,” Landecker concluded, “we really need to be going through a co-learning and co-listening process” in which life and social scientists consider how best to solicit community and public engagement with IVG.

A Patient Advocate Perspective on Developing Novel ART

Tanika Gray Valbrun, cofounder and CEO of the White Dress Project—a patient advocacy group for women living with uterine fibroids—provided her perspective on how scientists and clinicians can engage patient com-

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4 Ethnography is an observational research method that provides an account of a particular society or community, such as scientists researching IVG.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

munities during the development of novel ART. Her story and those of other patients matter, she emphasized, and embracing these voices can fill critical data gaps. During her talk, she shared her personal struggles with fertility due to uterine fibroids and how these experiences inspired her to establish The White Dress Project. In addition to raising awareness and providing a supportive community for those affected by this condition, her nonprofit has formed a coalition of patient advocates “who understand that they do not have to suffer alone in silence with these reproductive health issues,” she said. Gray Valbrun’s lived experience reflects that of many patients with uterine fibroids who endure challenges with fertility.5

Of IVG, Gray Valbrun said, “As a woman at my age, which is 45, I’m thinking about is motherhood really for me. Can it be for me? So when I hear that there are new technologies and new ways of doing things it excites me, especially as someone who physicians have told to consider [using] donor eggs, and is that where I am? And is this technology something that could be right for me?”

As scientists and clinicians develop novel technologies, Gray Valbrun urged them to consider people like her, those who have gone through multiple rounds of IVF and want to have a child. She also asked researchers to consider people who are not like her, who may lack access, resources, and financial ability. The financial toll of ART is staggering. “How many times have I had to mortgage my home or not consider doing something to make sure this can be a reality for me?” she asked. Echoing Marsh, Gray Valbrun said that patient communities need to be engaged and considered early in developing a novel technology, well before approaching rollout.

In addition to sharing her story and perspective, Gray Valbrun provided her thoughts on key points scientists and clinicians ought to consider when engaging the patient community on IVG:

  • Establishing open communication between stakeholders, including regular meetings and updates on progress and development.
  • Identifying shared goals and objectives for engagement, including specific research questions framed for patient advocates.
  • Ensuring that all stakeholders are respected and valued for their contributions, perspectives, and expertise.6

___________________

5 Gray Valbrun shared her personal battles with the term “infertility,” often preferring to say she is “fertility challenged.” She encouraged clinicians and scientists to be thoughtful about their words when approaching patients.

6 Gray Valbrun noted that not all patient advocates will have clinical or scientific expertise. Their voices as people with relevant lived experiences should be equally valued rather than dismissed or qualified.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
  • Fostering an inclusive environment that actively seeks participation from all stakeholders, including those from underrepresented and marginalized communities.7
  • Developing a shared understanding of the roles and responsibilities, including expectations for participation and contribution.
  • Encouraging transparency and providing clear explanations to stakeholders in understandable language.
  • Ensuring that patients and patient advocates are involved in all stages of the research process, from the study design to the dissemination of results.
  • Investing in providing training and resources to support effective management and patient engagement.
  • Fostering ongoing evaluation and reflection.

The importance of patient and community engagement cannot be understated, Valbrun said: “I am here [and] I’m standing in my power as a patient advocate, and I know that my voice is important to this conversation.”

PANEL DISCUSSION

The Complexity of Community Engagement

Suter asked panelists to reflect on how community voices can shape policy, especially in the United States, where, she noted, public engagement is not always taken seriously. Gray Valbrun identified making these issues personal as a potential solution for combating disinterest in women’s health issues in today’s embattled political climate. She said, “What has worked for our community is going to Capitol Hill and directly saying to policy makers—which are often White men—that this could be your wife, this could be the illness that your daughter is experiencing in college, and just making it very personal.”

Acknowledging that community engagement is not often a major driver of political decisions, Marsh focused instead on how to integrate it with technology development, empowering the tools to be shaped by diverse voices from the public. Marsh said that community engagement on advances in ARTs is made difficult by the lack of health literacy in the United States: “In a space where the health literacy is not where we want it to be and quite frankly not where it should be, it is hard to have

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7 As a Black woman, Gray Valbrun acknowledged the historical context that has made people from minoritized groups suspicious of participating in clinical trials and other research endeavors.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

an equitable conversation.” Improved education on the fundamentals of reproduction is needed so that stakeholders can understand why reproductive advances are relevant to them and participate in the discussions.

Building off Marsh’s points, Simon referenced two additional layers of context that complicate community engagement on women’s health issues. First, these providers have earned the distrust of their patients and community, Simon said, at least in part due to the high rate of U.S. maternal mortality. Second, she identified “the overall political climate of an attack on women’s health”8 as a factor that can weaken the impact of community engagement on policy.

Landecker spoke about researchers’ responsibility to listen to and amplify the voices of prospective stakeholders. She said from her work so far that these ARTs can “speak to some of the fundamental properties of being healthy in a democratic society. And those are principles of autonomy. Those are principles of choice. Those are principles of listening to constituents.” Many participants in her study were already considering how different policies could impact their use of IVG if it were ever available clinically (i.e., health insurance policies). She expressed her hope that the voices of stakeholders will be listened to across different realms.

Transformational Change

Ogbogu commented on how, for those in positions of power, a lack of humility can lead them to “step into these spaces” with “the confidence of people who know, when we don’t know. And with that confidence—we make assumptions, declarations, and even policies.” He acknowledged that activities discussing reproductive advances have begun including engagement panels, but an unwillingness to “cede space” remains. Ogbogu challenged the panelists to comment on how to learn to do so in an enduring and transformational way.

As part of her study, Landecker is examining the views, assumptions, and language of the public and the scientific community with respect to IVG. With her team, she will then “contrast the views symmetrically across different kinds of voices.” This work is critical because culturally influenced logic and assumptions operate in all spheres, including scientific ones, she said. By acknowledging that they too tend to operate under certain assumptions, making those assumptions understandable, and comparing them to those from other spaces, IVG researchers can cultivate an approach to their work that is enriched with nuance and balance.

___________________

8 Dr. Simon referenced the legal challenges to FDA approval of mifepristone, a safe and effective medication used to terminate pregnancy.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

Gray Valbrun said that the scientific elitism of researchers often leads to them excluding the public from conversations about developing technologies. As a result, she continued, patients and patient advocates are often left out, and when they are included, it can feel like an afterthought. To combat this, she proposed engaging patients and their advocates at the outset of developing a new technology all the way through to its design and implementation. In closing, Gray Valbrun suggested that technology development need to be approached “from a collaborative partnership ideology” in which scientists and clinicians value the ability of patient perspectives to broaden and inform their work.

Humility in Science

In their closing remarks, all three panelists reflected on the role of scientific hubris in developing new biotechnology. They each suggested that engaging diverse voices, acknowledging positionality, and listening to patients could be potent antidotes.

When engaging with communities, Marsh urged scientists and clinicians to resist hubris and dismissive attitudes, which patients and stakeholders often describe observing in research and medical professionals. Scientists and clinicians must acknowledge and address their blind spots by “creating diverse spaces with diverse voices,” she said, “at the end of the day, we want to make sure we are not an echo chamber, that we are not convincing ourselves about the power and the wonder of the science and missing out on the impact on humanity of the work. This is incredible science, and I think the goal of so many of us, and hopefully all of us, is that we all have the opportunity to benefit from it. If not us, then future generations.”

Continuing in this vein, Landecker reflected on the history of hubris in the development of biotechnologies. Unlike at the turn of the 20th century,9 scientists are more aware of its negative impacts and more willing to use tools to help recognize and address it, she said, noting the importance of reflexivity, positionality, and humility. She said that “[it is] is not just a moral position, it is also a methodological and technical question.” With these resources, scientists have a practical framework to guide their thinking about whether a new product or service should be introduced, if so, how, and what provisions are needed to minimize unintended consequences.

Gray Valbrun encouraged participants to continue including and centering patient voices. She said that clinician and scientist interactions

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9 Landecker uses H.G. Wells’s novel The Island of Dr. Moreau to help her students at the University of California, Los Angeles, understand how people viewed biotechnology in 1896.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×

with patients need to go beyond the meeting format. “I should be your friend, I should be colleague, I should be someone that you call” to ask questions, she said. Patient input can be married with clinical and scientific expertise to ensure the best decisions are made moving forward, Gray Valbrun concluded.

Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
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Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
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Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
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Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
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Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
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Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Page 104
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Page 105
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Page 106
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Page 107
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Page 108
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
Page 109
Suggested Citation:"7 Participatory Public Engagement Around Reproductive Science Advances." National Academies of Sciences, Engineering, and Medicine. 2023. In Vitro–Derived Human Gametes as a Reproductive Technology: Scientific, Ethical, and Regulatory Implications: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27259.
×
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Current assisted reproductive technologies such as in vitro fertilization (IVF) do not enable all prospective parents to have genetically related children. The National Academies Board on Health Sciences Policy hosted a workshop in April 2023 to explore the development of in vitro-derived human eggs and sperm from pluripotent stem cells through a process known as in vitro gametogenesis (IVG). Speakers emphasized the impacts of the potential biotechnology on research and reproductive medicine should clinical IVG ever be approved, along with the many social, ethical, legal, and technical considerations its development raises. This proceedings document summarizes workshop discussions.

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