Choices & boundaries report - Human Fertilisation and Embryology ...

1106Choices & boundaries Report - Human Fertilisation and Embryology AuthorityQuestion 4: How much emphasis should beplaced on the views of those people seekingtreatment?The HFEA guidance on PGD states that the viewsof the people seeking treatment are a factor thatshould be taken into account. The views of peopleseeking treatment are also important fordetermining the significance of the condition. Thisquestion was asked to understand how importantthe views of the people seeking treatment arerelative to other factors taken into account in thedecision making process."Clearly people seeking treatment cannot beobjective so little emphasis should be placed ontheir views when considering the ethics of thistreatment."Member of the public“Patients have a biased view point naturally andmost clinicians empathise and are grossly biasedalso. If the public are properly informed about theseissues then you can get the view point from societybut if the public are not well informed then wecannot expect to get rational or sensible opinionsfrom society”IVF clinicianSome people thought that the views of the peopleseeking treatment are important and should be takeninto account when considering the availability of PGD.Some people went further and said that it should onlybe the views of the people seeking treatment that areconsidered. The reason given for the above answersoften reflected the experience that patients have with theconditions and that actually they are the ones that arelikely to have seen family members suffering from thecancer that runs in their family and know what it is liketo live with the knowledge that they may also developthe cancer.Some people disagreed with this and thought the viewsof the people seeking treatment should be balancedwith other views. This was because they felt that peopleseeking treatment are not objective whereas society andprofessionals are. They thought less emphasis should beplaced on the views of the people seeking treatmentthan of professionals and society in general.“In my opinion almost total emphasis should beplaced on the views of the people seekingtreatment. It is the people from the familiesthemselves that are best placed to assess theimpact of the inherited condition.”Geneticist“What we think does not matter. It should actuallybe what the families think and at the end of the daythey are the only people that can actually tell ushow that affects them.”NurseChoices & Boundries Report 2006

1206Choices & boundaries Report - Human Fertilisation and Embryology AuthorityQuestion 5: Do you agree that the availabilityof PGD should be determined by currentpractice in prenatal diagnosis?This question was asked to understand whetherpeople felt there are some conditions where PGDwould be appropriate where perhaps prenataldiagnosis followed by termination of pregnancywould not be.A proportion of people that disagreed with PGD did notanswer this question.PGD availability shouldn’t be determined bycurrent practice in prenatal diagnosisRespondents to both the written discussion andparticipants at the public meeting seemed to think thatthe availability of PGD should not be determined bycurrent practice in prenatal diagnosis. The reasons forthinking so, however, were not consistent. The differencein reasoning was largely dependant on how the embryoin vitro is viewed compared to a fetus in utero. Somepeople do not agree with either PGD or prenataldiagnosis followed by termination and therefore did notthink that the availability of PGD should be guided byprenatal diagnosis. For some respondents PGD wasmore appropriate than prenatal diagnosis because PGDdoes not involve the termination of an alreadyestablished pregnancy and therefore the availability ofPGD should not necessarily be limited by currentpractice in prenatal diagnosis. There were alsocomments that legally PGD and terminations areregulated in a very different way so it is actually quitedifficult to compare the two techniques.“If PGD were not available then [the patient] wouldprobably decide not to have children. [Patients]don’t want to go through the abortion route as theyhave enough stress in their life”Patient representative“We have done some work with cancer patients andwhether they would have PND for [inherited cancerconditions] and 90% would say yes for breastcancer but only 2% would have a termination [if thefetus carried the faulty gene].A lot more would want PGD if it was available.”Clinical geneticist“The rules in the Abortion Act are that there has tobe a substantial risk of handicap but that’s notsubject to any regulation from a third party like inPGD, it is entirely a clinical decision.[…] The two arevery different.”Legal expert“One issue for consideration is the status of theembryo. The view that we take - and I suspect it isone that is held fairly widely in society - is that theembryo in vitro does not have the same moralstatus as the fetus in vivo and there may be adifferent justification for terminating a pregnancythan to test and discard embryos. One conclusionwe may well reach is that conditions that wouldn’tsatisfy serious handicap under the Abortion Act maynevertheless be suitable for PGD.”Bioethicist – Interest groupPGD availability should be determined by currentpractice in prenatal diagnosisSome people thought that the availability of PGD shouldbe determined by prenatal diagnosis to ensure that thereis consistency across services.“We do not really agree that the use of PGD shouldbe consistent with current practice in prenataldiagnosis. […] Perhaps PGD should be offeredmore widely because testing of the embryos occursat an earlier stage”Genetic counsellorsChoices & Boundries Report 2006

1306Choices & boundaries Report - Human Fertilisation and Embryology AuthorityQuestion 6: Where do you feel the boundariesfor PGD lie?There is no intention following this discussion toproduce a list of conditions that are not appropriatefor PGD. However, the purpose of asking thisquestion was to find out which conditions peoplethought should never be tested for using PGD. TheHFEA guidance states that PGD should only beavailable where there is a significant risk of aserious genetic condition being present in theembryo and therefore PGD would not be licensedfor cosmetic conditions where there were nomedical consequences.The views on this were quite diverse. Some people feltthat the boundary has been passed and PGD is alreadyavailable for too many conditions. Another group ofrespondents felt that PGD should not be allowed forconditions that are easily treated or for cosmetic, nonmedicaltraits or for the positive selection of physicaltraits. Some people specifically said that the lowerpenetrance inherited cancer conditions such as the onesunder discussion here should not be tested for usingPGD while others drew the line at behavioural conditionssuch as Asperger’s. One person referred to a recentNuffield Council on Bioethics report on behaviouralgenetics which said that PGD should not be allowed toselect for positive personality traits such as intelligence.There were also some people that felt no conditionshould be ruled out (no absolute boundaries should bedrawn) and that it should be up to the patients or thepeople seeking treatment to decide.“PGD should never be permitted for cosmetic orcultural reasons […] or for easily surgically treatableconditions. Nor should it be used to treat late onsetor treatable, or potentially treatable, conditions”Member of the public“The conclusion that was argued was that PGD istotally unacceptable for behavioural or socialconditions as it was felt they were more parentalpreferences. The parents were predestining thechild as being well behaved. It would be terrible forPGD to be associated in this way with theseconditions.”Philosopher (bioethics)“Specific learning difficulties like Aspergers,dyspraxia, dyslexia, ADHD, etc, could be futurecandidates for PGD. This would be highlyundesirable. It would look like eugenics or socialengineering.”Member of the publicPGD should not be used to test for any condition.Screening embryos, with a view to destroying, ifcertain criteria are not fulfilled, should not be carriedout, as it is eugenic in natureMember of the public“The drawing up of lists and the setting of arbitraryboundaries is inappropriate in our view. […] Settingboundaries is likely to create suffering and injusticefor those who fall on the “wrong” side of the line butwho turn out to have a particularly unfortunateversion of the presenting condition.”Patient groupChoices & Boundries Report 2006

1406Choices & boundaries Report - Human Fertilisation and Embryology Authority05 Findings of the Choices & boundariespublic discussionThe views of those involved in the Choices &boundaries discussion varied significantly and nooverall consensus emerged on the use of PGD forinherited cancer susceptibility conditions. However,there were some questions where there wasagreement, often where there were quite differentviews on PGD in general. For example, people felt,although for very different reasons, that the availabilityof PGD should not be determined by current practicein prenatal diagnosis. There was also consensusaround the issue of penetrance and significant riskwhere there was some agreement that penetrancealone was not the only factor that should be takeninto account.The lack of an overall consensus is probablyunsurprising as it is almost impossible forcompromise or consensus on issues where the viewsof respondents, and society in general, are sopolarised and this highlights the difficult environmentin which the HFEA has to make decisions.At the public meeting there was general support forthe use of PGD for inherited cancer conditions. Themajority of people at the meeting considered theseconditions were serious genetic conditions and did‘fit’ the HFEA guidance on the use of PGD. Theviews of the people that responded to the discussiondocument were much more varied. There was asignificant proportion of people who responded tothe written document who did not agree with the useof PGD to avoid passing on an inherited susceptibilityto the cancer conditions in question. Amongst thisgroup there were those that disagreed with all PGDand IVF treatments that result in the destruction ofembryos as well as those who might agree with PGDin general but felt that PGD for the conditions inquestion is not appropriate.Choices & Boundries Report 2006

Human Fertilisation and Embryology Authority21 Bloomsbury StreetLondon WC1B 3HFTelephone: 020 7291 8200Website: www.hfea.gov.ukEmail: pgd@hfea.gov.uk