{"id":3510,"date":"2019-06-13T03:21:28","date_gmt":"2019-06-13T02:21:28","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=3510"},"modified":"2019-06-13T03:21:28","modified_gmt":"2019-06-13T02:21:28","slug":"was-this-on-the-consent-form-can-you-really-consent-in-a-one-off-conversation-to-interventions-with-uncertain-and-evolving-consequences","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2019\/06\/13\/was-this-on-the-consent-form-can-you-really-consent-in-a-one-off-conversation-to-interventions-with-uncertain-and-evolving-consequences\/","title":{"rendered":"\u2018Was this on the consent form?\u2019 Can you really consent in a one-off conversation to interventions with uncertain and evolving consequences?"},"content":{"rendered":"

By Rachel Horton, Benjamin Bell, Angela Fenwick, Anneke Lucassen<\/p>\n

A child conceived with a donated egg has multiple health problems but no unifying diagnosis. Given that testing of biological parents may help make a genetic diagnosis in a child, is it OK to contact the child\u2019s anonymous egg donor to ask if they would provide a DNA sample for testing? What if at the time of donation the egg donor\u2019s consent form said they didn\u2019t want to know if they\u2019re found to be a carrier of a harmful inherited condition, and they didn\u2019t want to take part in future research?<\/p>\n

In our article, which is based on a real case, we discuss why we think it should be possible to contact the egg donor to ask if she\u2019d consider having genetic testing. We wouldn\u2019t want to make her have any testing if she doesn\u2019t want to, but we think it\u2019s reasonable to ask if she\u2019d consider it. Currently, the Human Fertilisation and Embryology Authority says we should not be able to ask her.<\/p>\n

Genetic testing has changed a lot over recent years and it means that there are options now that didn\u2019t exist several years ago, and that could not have been foreseen. One powerful way to find diagnoses for children with genetic conditions is \u201ctrio\u201d testing. This involves comparing the genetic code of a child with that of their biological parents, looking for variants (differences in the genetic code) that have happened new in the child, or variants inherited from each biological parent that have come together in the child to cause a health problem.<\/p>\n

Egg donors are asked some questions about their own health and genetic conditions in their family, but even now, there probably wouldn\u2019t be much discussion about whether an egg donor\u2019s DNA sample might one day be useful for trio testing.<\/p>\n

Given this, we think the egg donor wasn\u2019t asked at the time of consent whether she would be willing to provide a DNA sample in the future to help find a diagnosis for a child conceived from her donated egg, and that her refusal of consent to genetic research doesn\u2019t necessarily apply here. We argue that rather than guessing what she might think about having genetic testing based on her answers to somewhat different questions from many years ago, it makes more sense to ask her what she thinks about this now. Furthermore, why should we deny her a choice just because she has said \u2018no\u2019 as an answer to a different question?<\/p>\n

At the same time we realise this feels a bit uncomfortable \u2013 what are consent forms for if we can\u2019t rely on them to decide questions like this? We suggest that some of the difficulty here is because often when we think about \u2018consent\u2019 in medicine, we\u2019re thinking about narrower decisions, like whether or not to have an operation, or whether or not to start a particular drug. For these sort of decisions, the possible implications are often easier to predict, and might happen quite soon if they\u2019re going to happen at all (though there will be some exceptions).<\/p>\n

In contrast, technologies like egg donation and genomic testing may open up new and unforeseen possibilities, and mean that clinicians and patients can end up in territories that weren\u2019t mapped out at the time of initial consent. They are especially complex because decisions taken by or for one person can have consequences for several others. For example, what should we do if an egg donor says she wants no further contact, but we find out through the birth of a child, that the donor carries a genetic condition, which might not cause her any problems but which might affect her existing children, or future children? Should the egg donor\u2019s refusal of future contact override alerting her children to their risks?<\/p>\n

Our article discusses that for situations like egg donation or genomic testing, consent is better viewed as an ongoing conversation, where clinicians might sometimes need to go back to check things with patients, rather than guessing what they might want based on a tick-box form from years ago. For technologies with such varied and unpredictable consequences, we also think it\u2019s unrealistic to expect consent to \u2018do all the work\u2019. Other factors will also be important, like balancing benefits and risks, and aiming to use resources responsibly and fairly. We need to consider these factors too when new options arise due to advances in technology, rather than assuming that consent, if sufficiently detailed, can answer any and every question.<\/p>\n

 <\/p>\n

Paper title: <\/strong>Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child?<\/a><\/p>\n

Authors: <\/strong>Rachel Horton*, Benjamin Bell*, Angela Fenwick, Anneke Lucassen (*=joint first authors)<\/p>\n

Affiliation: <\/strong>Clinical Ethics and Law at Southampton (CELS), University of Southampton<\/p>\n

Competing interests: <\/strong>None.<\/p>\n

Social media accounts of post authors: <\/strong><\/p>\n

Twitter: @rach_horton<\/a> @annekeluc<\/a> @Ajf3Angela<\/a> @cels_uos<\/a><\/p>\n

Website: https:\/\/whatismyresult.wordpress.com\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

By Rachel Horton, Benjamin Bell, Angela Fenwick, Anneke Lucassen A child conceived with a donated egg has multiple health problems but no unifying diagnosis. Given that testing of biological parents may help make a genetic diagnosis in a child, is it OK to contact the child\u2019s anonymous egg donor to ask if they would provide […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":353,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[968,8048,2022],"tags":[],"class_list":["post-3510","post","type-post","status-publish","format-standard","hentry","category-clinical-ethics","category-genetics","category-reproduction"],"yoast_head":"\n\u2018Was this on the consent form?\u2019 Can you really consent in a one-off conversation to interventions with uncertain and evolving consequences? - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2019\/06\/13\/was-this-on-the-consent-form-can-you-really-consent-in-a-one-off-conversation-to-interventions-with-uncertain-and-evolving-consequences\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u2018Was this on the consent form?\u2019 Can you really consent in a one-off conversation to interventions with uncertain and evolving consequences? - Journal of Medical Ethics blog\" \/>\n<meta property=\"og:description\" content=\"By Rachel Horton, Benjamin Bell, Angela Fenwick, Anneke Lucassen A child conceived with a donated egg has multiple health problems but no unifying diagnosis. 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