Direct-to-consumer genetic testing and donor-conception: support and governance in emerging digital systems
Lead Research Organisation:
University of Liverpool
Department Name: Institute of Psychology Health & Society
Abstract
The growth in the use of direct-to-consumer-genetic testing (DTCGT) is having a major impact on sperm, egg and embryo donor conception (hereafter donor conception). Specifically, it creates difficulties in maintaining the anonymity of donors. DTCGT services include family history sites, e.g. Ancestry.com, and medical testing sites, e.g.23andme. Despite the different motivations people have for using these services, it is now easier to search and find donor relatives, with donor-conceived people, recipients of donor gametes and embryos, and donors all using these services to make hitherto unlikely connections. Some individuals have found large numbers of donor-siblings, while donors have been traced by their adult donor offspring. DTCGT can also reveal unexpected origins with the numbers of people finding out they are donor-conceived through DTCGT rapidly increasing. For example, one woman discovered she was donor conceived after using 23andme to assess her risk of breast cancer, an eventuality she had never anticipated when she decided to take that test. These discoveries often come at a cost, disrupting family life and relationships and exposing family secrets. This can lead to reassessments of family history and individual identity.
This project aims to examine the experiences and the governance implications of the use of DTCGT by those involved in donor conception. The focus is on the UK context but the project will have implications for practice in other countries.
This study is important because the use of DTCGT is growing rapidly without the corresponding development of good practice guidelines and governance structures. With the exponential rise in the use of donor conception and DTCGT, predicted to grow to over 100 million people worldwide taking tests by 2021, the ability to uncover donor relations will affect an increasing number of people. The first cohort of people born under non-anonymity will come of age in 2023 in the UK and be able to access identifying information about their donor through the HFEA Register. In light of all these factors, there is a pressing need for research on how people experience searching for and accessing information about their donor-conceived relations and what, if any, regulatory reforms are needed.
This is an inter-disciplinary project, drawing on sociology, socio-legal studies, family psychology and bioethics, using a range of theoretical resources from these disciplines. We will employ a variety of methods to explore the multi-faceted nature of the growing use of DTCGT: law; policy analysis; expert interviews; qualitative interviews with donor-conceived adults, donor and parents; interactive workshops; and ethical and socio-legal analysis.
This project will make a substantial contribution by producing the evidence-base that current provision, policy and regulation lacks. The findings will also be relevant to wider uses of DTCGT and the use of online health services more generally. The project will generate impact in three key areas:
1. Produce information and support materials for users of DTCGT: donor-conceived people, donors and parents; and those thinking of using DTCGT.
2. Provide practical guidance and support materials for professionals (clinics, counsellors) and DTCGT companies.
3. Make governance recommendations for policy makers and regulators both nationally and internationally.
This project aims to examine the experiences and the governance implications of the use of DTCGT by those involved in donor conception. The focus is on the UK context but the project will have implications for practice in other countries.
This study is important because the use of DTCGT is growing rapidly without the corresponding development of good practice guidelines and governance structures. With the exponential rise in the use of donor conception and DTCGT, predicted to grow to over 100 million people worldwide taking tests by 2021, the ability to uncover donor relations will affect an increasing number of people. The first cohort of people born under non-anonymity will come of age in 2023 in the UK and be able to access identifying information about their donor through the HFEA Register. In light of all these factors, there is a pressing need for research on how people experience searching for and accessing information about their donor-conceived relations and what, if any, regulatory reforms are needed.
This is an inter-disciplinary project, drawing on sociology, socio-legal studies, family psychology and bioethics, using a range of theoretical resources from these disciplines. We will employ a variety of methods to explore the multi-faceted nature of the growing use of DTCGT: law; policy analysis; expert interviews; qualitative interviews with donor-conceived adults, donor and parents; interactive workshops; and ethical and socio-legal analysis.
This project will make a substantial contribution by producing the evidence-base that current provision, policy and regulation lacks. The findings will also be relevant to wider uses of DTCGT and the use of online health services more generally. The project will generate impact in three key areas:
1. Produce information and support materials for users of DTCGT: donor-conceived people, donors and parents; and those thinking of using DTCGT.
2. Provide practical guidance and support materials for professionals (clinics, counsellors) and DTCGT companies.
3. Make governance recommendations for policy makers and regulators both nationally and internationally.
Organisations
- University of Liverpool (Lead Research Organisation)
- National Gamete Donation Trust (Collaboration)
- Department of Health (DH) (Collaboration)
- Donor Conception Network (Collaboration, Project Partner)
- University of Oulu (Collaboration)
- European Society of Human Reproduction and Embryology (Collaboration)
Publications
Frith L
(2021)
O-060 Ethical implications of the direct to consumer genetic testing. What should donors and recipients know?
in Human Reproduction
ESHRE Working Group On Reproductive Donation
(2022)
Good practice recommendations for information provision for those involved in reproductive donation†.
in Human reproduction open
| Title | Birmingham stakeholder workshop graphic recording |
| Description | The graphic artist captured the discussion at our stakeholder workshop on large boards, one for each section of the workshop. Using bold strokes and cartoon-style characters, in a range of colours, he was able to create a clear and engaging record of the discussions, capturing key points in both graphics and words. The physical outputs were then captured digitally. |
| Type Of Art | Artwork |
| Year Produced | 2023 |
| Impact | Artwork from the workshop formed the basis for a series of leaflets we have co-constructed with a range of collaborators. The leaflets are designed for egg and sperm donors considering the possibility of being contacted by someone conceived as a result of their donation andprovide information and suggest sources of support for donors and their families. Using draphic content and simple formatting, the leaflets present important information in an accessible way. The Human Fertilisation and Embryology Authority has used our leaflets in its website, as part of a campaign to reach out to donors who might be contacted. The link is below - scroll down to the bottom of the page to find the leaflets. |
| URL | https://www.hfea.gov.uk/donation/donors/?conesso_link_tag=6a4c3aa9c&utm_campaign=Clinic+Focus+-+Nove... |
| Title | Manchester stakeholder workshop graphic recording |
| Description | The artwork consists of a series of graphic representations of discussions at a research stakeholder workshop. Presenting participants in a non-identifiable way, the artist has captured the main themes of the discussion in a series of visually appealing watercolours, which have been digitised. |
| Type Of Art | Artwork |
| Year Produced | 2023 |
| Impact | Workshop attendees told us that they found the artwork useful in representing the themes arrising from the discussion. No broader impacts as yet, but we will use the artwork in planned outputs. |
| Description | Our research finds that the rise of direct-to-consumer genetic testing (DTCGT) is impacting how information and connections relating to donor conception are managed and experienced in the UK. This can create or accentuate challenges for people affected by donor conception and those who seek to regulate or support these groups. 1. As already noted by various scholars and as is increasingly being reported in the media (Guardian article, BBC article), the rise of DTCGT leads to growing numbers of people discovering they are donor conceived via late and/or shock discoveries. Such events are often associated with psychological distress and disrupt family relationships. However, we would add that our research also highlights processes which can support people and families experiencing this process and rebuild family relationships e.g. an understanding of the circumstances in which decisions to keep secrets were made, follow up care from parents and support from donor conceived peers. 2. The ease with which DTCGT can be accessed, its relative affordability and the way in which it is regulated as any other consumer product creates greater flexibility with regard to the age at which information about (initially unknown) donor relatives can be accessed. This is a significant difference from the UK's 'official' system for sharing such information, which dictates that donor conceived people can only access identifying information about their donor or donor siblings after the age of eighteen. This means today's parents through donor conception and their donor conceived children have much greater agency to shape if and how age, and particularly the different life stages of child-adolescent-adult, matter in relation to managing connections created through donor conception. 3. The rise of DTCGT increases the role of lay intermediaries and gatekeepers in managing information about donor conception and the connections it gives rise to. Often users of DTCGT find themselves unexpectedly in a situation where they hold knowledge of others' genetic relatives or status in relation to donor conception, which that person may not have about themselves. This happens when, for example, donors 'match' with a donor conceived person via a DTCGT database but the donor conceived person was previously unaware of the circumstances of their conception. In such situations, lay intermediaries are faced with often challenging ethical decisions regarding whether, with whom and how they should share this information. 4. DTCGT accentuates the potential impact of donor conception for persons outside of the usual triad (donor, parent, and donor conceived persons) typically referenced in UK policy and practice. Whilst UK regulations only permit the sharing of donor conception information between these three groups, 'unofficial' systems (combining DTCGT and social media data) often more directly affect and involve donor's genetic family members (and, theoretically, also the descendants of donor conceived people) who may find themselves in the position of being a lay intermediary and/or may develop their own relationships with people related through donor conception. 5. The rise of DTCGT, and the discussions around its implications for donor anonymity, can lead to an unfulfilled expectation that 'official' systems of anonymity are always surmountable. When this is desired but not experienced, and because connection-making through DTCGT is an continual process rather than a one off event, this can lead to cycles of disappointment (sometimes distress). |
| Exploitation Route | Policy makers nationally (HFEA) and internationally will be interested in our findings, as well as commercial direct-to-consumer genetic testing companies. |
| Sectors | Digital/Communication/Information Technologies (including Software) Healthcare |
| URL | https://sites.manchester.ac.uk/connecte-d-n-a/ |
| Description | Our project has been mentioned in HFEA policy briefings and a recognition that direct to consumer genetic testing is having a large impact on gamete donor anonymity, has influenced the latest HFEA consultation. |
| First Year Of Impact | 2022 |
| Sector | Digital/Communication/Information Technologies (including Software),Healthcare |
| Impact Types | Societal Policy & public services |
| Description | Feedback on Egg Sharing Leaflet for Birmingham Women's Hospital |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | We understand that our suggested changes were implemented. The expected outcome is that future donors (and those considering donating) will be better informed. |
| Description | HFEA Horizon Scanning Meeting |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Human Fertilisation and Embryology Authority - consultation on reforming the HFE Act 1990 |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www.hfea.gov.uk/about-us/modernising-the-regulation-of-fertility-treatment-and-research-invo... |
| Description | Meetings with members of the APPG on health |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Preparing for contact: five new leaflets which provide information and signposting for egg and sperm donors about the possibility of contact from any donor-conceived people born from their donations. |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.hfea.gov.uk/donation/donors/?conesso_link_tag=6a4c3aa9c&utm_campaign=Clinic+Focus+-+Nove... |
| Description | Research findings used in training session for DCN staff |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | DCN staff will have improved knowledge of how commercial DNA testing is being used in relation to donor conception and the key social and emotional challenges which arise for people affected by donor conception. They will thus be better placed to advise and inform their members and wider publics. |
| Description | Response to Law Commission Consultation |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.liverpool.ac.uk/media/livacuk/law/2-research/hlru/Response,to,Law,Commission,Consultatio... |
| Description | ESRC Impact Acceleration Account Rapid Response Scheme |
| Amount | £2,990 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2022 |
| End | 03/2023 |
| Description | The Manchester ESRC Festival of Social Science 2023 |
| Amount | £500 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2023 |
| End | 11/2023 |
| Description | DNADialogues |
| Organisation | University of Oulu |
| Country | Finland |
| Sector | Academic/University |
| PI Contribution | The DNADialogues Network has a particular focus on direct-to-consumer genetic testing (DTCGT) and its societal ramifications. This ongoing collaboration is exploring, from the perspectives of the research being carried out in the UK and in Finland, how ordinary people are involved in using, and impacted by, this rapidly growing technology. The aims of the collaboration are to host and/or facilitate online and face-to-face workshops and conferences, and to act as a link between researchers who are emerged in these topics. The online launch event will take place on 8 March, 2024. Building on the findings of our qualitative, doctrinal and socio-legal research to date, the ConnecteDNA team has contributed empirical evidence of how DTCGT is changing the way information about donor conception is accessed, and how people find and share information about donor conception. Our data show that DTCGT can also affect peoples' extended family and other relatives and challenge notions of kinship and relatedness. Our research will underpin international, inter-disciplinary discussion of the sociological, legal and regulatory implications of DTCGT with a view to informing change. |
| Collaborator Contribution | At a workshop held in Manchester in June, 2023, Finnish academics Dr. Joa Hiitola (PI, the Labs to Living Rooms project), an Associate Professor in Social Policy and Director of Gender Studies at the University of Oulu, Finland, Dr Anna Rönkä, University of Oulu, and Laura Menard, PhD researcher, University of Oulu met with Lucy Frith, Leah Gilman and Carolibe Redhead (ConnecteDNA team members) to discuss our rsearch and to plan the development of the DNADialogues collaboration. Representing a wider Finnish collaboration, the Oulu academics contributed empirical evidence from their own projects, access to potential funding streams to support the hosting of an international workshop, and ideas about new qualitative methodologies, including the use of 'essays'. |
| Impact | An international and inter-disciplinary online workshop will take place on 8 March, 2024. The disciplines involved include bioethics, sociology, law, psychology, education and gender studies. |
| Start Year | 2023 |
| Description | ESHRE |
| Organisation | European Society of Human Reproduction and Embryology |
| Country | Belgium |
| Sector | Learned Society |
| PI Contribution | We work with ESHRE on guideline develop and educational sessions. |
| Collaborator Contribution | Helping us organise European events and supporting our dissemination. |
| Impact | Good practice recommendations for information provision for those involved in reproductive donation https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Information-provision-in-donation |
| Start Year | 2020 |
| Description | Human Fertilisation and embryology authority |
| Organisation | Department of Health (DH) |
| Department | Human Fertilisation and Embryology Authority (HFEA) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | They have a representative on the project advisory board and are helping us with the direction of the project and will help us disseminate our findings. |
| Collaborator Contribution | Advice and dissemination help. |
| Impact | Not to date. |
| Start Year | 2021 |
| Description | Preparing Donors for Contact (Knowledge Exchange Consortium) |
| Organisation | Donor Conception Network |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | leading knowledge exchange project, bringing together multiple collaborators, to create resources to help prepare donors and their families for the possibility of contact |
| Collaborator Contribution | - drawing on experience and collaborating with team to create the resources needed - support with hosting website. |
| Impact | - resources for donors and their families, to be hosted on collaborator's website - further funding application to continue work of the consortium |
| Start Year | 2022 |
| Description | Preparing Donors for Contact (Knowledge Exchange Consortium) |
| Organisation | National Gamete Donation Trust |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | leading knowledge exchange project, bringing together multiple collaborators, to create resources to help prepare donors and their families for the possibility of contact |
| Collaborator Contribution | - drawing on experience and collaborating with team to create the resources needed - support with hosting website. |
| Impact | - resources for donors and their families, to be hosted on collaborator's website - further funding application to continue work of the consortium |
| Start Year | 2022 |
| Description | Article in The Conversation: Eggs and sperm can now be stored for up to 55 years - here's what that means for donors and people seeking fertility treatment |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Article in The Conversation discussing the implications of changes to UK rules on storage of gamete for people involved in donor conception, |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://theconversation.com/eggs-and-sperm-can-now-be-stored-for-up-to-55-years-heres-what-that-mean... |
| Description | Bionews article |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Blog post aimed at widening the debate around direct to consumer genetic testing and donor conception, written in response to a recent piece in mainstream media about HFEA comments on topic. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.progress.org.uk/widening-the-debate-about-direct-to-consumer-genetic-testing-and-donor-c... |
| Description | DCN Journal Article |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Invited article for the DCN's magazine for members. The article gave up an update on our preliminary research findings as well as a call for further participants. |
| Year(s) Of Engagement Activity | 2022 |
| Description | ESHRE Annual Conference Presentation and Press Release |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Press release relating to Lucy Frith's ESHRE presentation sharing preliminary findings from the project |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eshre.eu/ESHRE2022/Media/2022-Press-releases/Frith |
| Description | ESRC Festival of Social Science event: Creating families with egg and sperm donor conception |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Around 15 people participated in an interactive evening workshop focusing on the evolving landscape of forming families by egg and sperm - gamete - donor conception in fertility treatment. The event aimed to raise awareness of gamete donor conception and will be of particular interest to professionals, such as teachers, healthcare professionals and social workers, people who may encounter donor conceived people or people trying to conceive/who have conceived with donated gametes in their professional life. This event will also be of interest to people considering or undergoing fertility treatment. The event sparked interest for student professionals (eg student midwives) in the experiences of parents by donor conception, and how they might change their clinical engagement as a result. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Policy@Manchester blog post: ConnecteDNA - the implications of technology on donor conception anonymity |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The Human Fertilisation and Embryology Authority (HFEA) has recently sought views about reforming the law on fertility treatment regulation and embryo research. They identified a number of issues with the current legal framework, around which the public consultation was structured. In this article, Dr Caroline Redhead and Dr Lucy Frith examine one such issue, the challenge to donor anonymity caused by the availability of direct-to-consumer genetic testing (DTCGT). The concern is that DTCGT makes it possible to circumvent the current regulatory system, designed to protect the anonymity of gamete (egg, sperm and embryo) donors until donor-conceived people reach the age of 18. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://research.manchester.ac.uk/en/clippings/connectedna-the-implications-of-technology-on-donor-c... |
| Description | Policy@manchester blog post. Reforming UK fertility legislation: the effects of online DNA testing |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | On 14th November 2023, the HFEA Recommendations following its public consultation were published. This article discusses the recommendations. The article was picked up from the Policy@Manchester briefing by local newspapers (eg Lancaster Guardian). |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://blog.policy.manchester.ac.uk/posts/2023/11/reforming-uk-fertility-legislation-the-effects-of... |
| Description | Presentation to Fertility conference, 2024 - Rethinking Reproduction |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of research findings from the ConnecteDNA project: How direct-to-consumer genetic testing is changing the landscape of donor conception: Implications for professionals and policymakers. Presenting practical suggestions for change to a group of professional practitioners active in this area. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.fertilityconference.org/event/64bd181f-e19f-4509-abdd-474e3ae36b23/websitePage:bb7ff577-... |
| Description | Presentation to the Annual Conference of the British Infertility Counselling Association. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of the findings of the ConnecteDNA research project to a national conference of professional infertility counsellors, with a view to informing debate about the implications of direct-to-consumer genetic testing on gamete donors, recipient parents and the donor-conceived community as regards counselling and psycho-social support |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.bica.net/event/110/BICA/BICA-1988-2023-BICA-2023-Annual-Conference-and-Celebrations-of-3... |
| Description | Presentation to the Association of Reproductive & Clinical Scientists |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to the Association of Reproductive & Clinical Scientists Symposium 2023 discussing the views and experiences of ConnecteDNA interview and stakeholder workshop participants in a broadly-drawn socio-legal discussion about whether (and how) a reformed regulatory framework might better attend to the needs of both gamete donors and the donor-conceived community. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://uobevents.eventsair.com/arcs-2023/programme |
| Description | Presentation to the European Association of Centres of Medical Ethics annual conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of the findings of the ConnecteDNA research, focusing on an argument for law reform to remove donor anonymity with retrospective effect. Aim was to stimulate inter-jurisdictional debate on the merits/problems and ethics of retrospective law reform |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://eacme2023.filozofia.uw.edu.pl/ |
| Description | Regulatory round-table |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Our regulatory round-table brought together regulators, academics, representatives of charities, clinicians and members of the donor-conceived community with broad interests in donor conception, data protection and law reform. Discussion was organised around three questions: 1. What legal or regulatory reform might best manage the interests of donors, parents by donor conception and donor conceived people in accessing information about gamete donors' identity, whether via DTCGT or under the HFE Act 1990? 2.How might donors, donor-conceived children and/or parents by donor conception be given a legal route to access information about relatives through donor conception other than the gamete donor themselves (including, for example, reducing the age of access to the Donor Sibling Link service)? We are thinking here about both genetic relationships and those connected by donor-conception in other ways - such as the partner, or the other children of a donor, to those conceived of that donor's donation. 3.Is reform of the regulation of DTCGT service providers desirable/possible? If so, what might that look like, and which regulator might be appropriate? The aim was to engage relevant regulators in our research and its findings, with a view to paving the way to future policy and/or regulatory impact. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Rights and duties in donor conception |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This course will introduce all professionals in the field of ART to basic ethical principles for consideration in a clinical or research context. Our speakers will analyse moral and ethical questions arising from the application of emerging techniques, some of which are still questionable or under discussion. The lectures will be carried out from a multidisciplinary perspective and will focus on the basic research lab and the clinic. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.eshre.eu/Education/Webinars/Ethics-hour-at-ESHRE_2022/Programme |
| Description | Stakeholder Workshops (x 3) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We hosted three stakeholder workshops (in Manchester, London and Birmingham), with between 10 and 25 people attending each. Participants included people both professionally involved and personally affected by donor conception. The researchers shared some of their early research findings and gathered feedback from participants on their responses and particularly how we can make best use of our findings to support affected communities. |
| Year(s) Of Engagement Activity | 2022,2023 |
| Description | Talk to STAG (solo parent talk and action group) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk about the ConnecteDNA project |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://sites.manchester.ac.uk/connecte-d-n-a/ |
| Description | Talk to the HFEA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | I presented our research to HFEA staff, on the implications of direct-to-consumer genetic testing. The HFEA are the regulator of gamete donation in the UK. This has the potential to influence their thinking in this area and influence policy change. |
| Year(s) Of Engagement Activity | 2022 |
| Description | The ConnecteDNA project: thinking about law reform and gamete donor anonymity |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Human Fertilisation and Embryology Authority consulted in spring 2023 about reforming the law on fertility treatment regulation and embryo research. This article focuses on the sharing of information around donor conception, one of the key aspects of the consultation. Some key points from the ConnecteDNA response to the consultation are discussed. The intended purpose was to increase awareness of the ConnecteDNA research, with a view to providing an evidence base for arguments supporting the removal of donor anonymity and a (funded) increase in counselling and other mechanisms of support for those affected by donor conception, particularly following shock discoveries as a result of the use of direct-to-consumer genetic testing. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.progress.org.uk/the-connectedna-project-thinking-about-law-reform-and-gamete-donor-anony... |
| Description | Webinar/podcast with Path to Parenthood |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk/presentation about the ConnecteDNA research project |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://sites.manchester.ac.uk/connecte-d-n-a/ |