Organ and tissue donation and transplantation: analysis of consultation responses

7.Explicit authorisation in a soft opt out system (Q6 - Q9)

7.1 This chapter discusses respondents' views in relation to consultation questions 6 to 9. These questions sought views about the 'excepted' categories of people for whom explicit authorisation - either from the person themselves or from their family - would still be required in a soft opt out system.

7.2 The consultation paper explained that in a soft opt out system, deemed authorisation for donation would generally apply. However, some exceptions to the general rule would also exist. The consultation paper set out proposed exceptions that would apply in relation to three specific groups, referred to as 'excepted' categories of people:

• Someone who, over a period of time before their death, did not have capacity to take a decision on donation
• A child under a certain age (the consultation paper suggested that deemed authorisation might only apply for children older than 16, but sought views on this issue)
• Anyone who had not been resident in Scotland for at least 12 months before their death.

7.3 If an individual was in one of these three categories at the time of their death, deemed authorisation would not apply; rather, the proposal was that donation could only proceed if explicit authorisation was given.

7.4 The consultation sought people's general views about the appropriateness of the three proposed excepted categories. It also sought specific views on (a) the circumstances in which an adult should be viewed as 'not having capacity' to make their own decisions about donation; and (b) for children, the age under which donation would only be able to take place with explicit authorisation - and above which deemed authorisation would apply. Finally, views were invited about whether local authorities should (or should not) be allowed to authorise donation of organs and tissue from a child in care if no parent is available. The consultation asked four questions about these matters.

Question 6: If there was a soft opt out system, what do you think about the categories of people (described in the consultation paper, pages 15 to 17) for whom explicit authorisation would still be needed from the person themselves or a family member? [The categories are sufficient / The categories are not sufficient / Don't know]

Question 6a: If these are not sufficient why do you think this?

Question 7: In what circumstances do you think an adult should be viewed as not having the capacity to make their own decisions about donation and therefore should not be subject to any deemed authorisation provisions?

Question 8: Under what age do you think children should only be donors with explicit authorisation? [Under 12 / Under 16 / Under 18 / Other, please specify]

(continued)

Question 9: For children who are in care, what are your views on allowing a local authority which has parental responsibilities and rights for a child to authorise donation for the child if no parent is available? [They should be allowed to authorise donation of a child's organs or tissue in those circumstances / They should not be allowed to authorise donation of a child's organs or tissue / Don't know]

Excepted categories of people (Q6 and Q6a)

7.5 Question 6 asked respondents about the three categories of people for whom explicit authorisation should still be needed in a soft opt out system. Respondents were asked to indicate whether or not these categories were sufficient. If the respondent indicated that the categories were not sufficient, a follow-up question (6a) invited further comment.

7.6 Altogether, 797 respondents (33 organisations and 759 individuals) replied to the initial closed part of this question. Around three-quarters of both organisational and individual respondents expressed agreement with the three proposed categories of people for whom explicit authorisation would be required in a soft opt out system; that is, they believed these categories were sufficient. Only faith groups among the organisational respondents were more likely to say that the categories were not sufficient ( Table 7.1).

Table 7.1: Q6 -- If there was a soft opt out system, what do you think about the categories of people for whom explicit authorisation would still be needed from the person themselves or from a family member?

Respondent type	The categories above are sufficient	The categories above are not sufficient	Don't know	Total
NHS and / or local authority	10	2	-	12
Professional groups and regulatory bodies	7	-	-	7
Charity, voluntary sector or patients' rights groups	6	2	-	8
Faith groups	1	4	1	6
Organisation total	24	8	1	33
Organisation percentage	73%	24%	3%	100%
Individual respondents	602	93	64	759
Individual percentage	79%	12%	8%	100%
Total (organisations and individuals)*	626	101	65	792
Total percentage	79%	13%	8%	100%

7.7 One hundred and twenty-five respondents (19 organisations and 106 individuals) made comments in response to Question 6a explaining more about their reasons for not thinking the categories proposed were sufficient. This includes 14 respondents who did not tick any of the boxes given at Question 6, and 14 others who had indicated they thought the proposed excepted categories were sufficient. The comments of the latter group are discussed briefly before going on to consider all other comments made in response to this question.

Views of respondents who thought the categories were sufficient

7.8 Although question 6a asked for further information from those who thought the proposed excepted categories were not sufficient, 14 respondents who agreed with the categories nevertheless offered additional comments.

7.9 In some cases, these comments simply stated satisfaction with the categories, saying that they were 'reasonable' or 'appropriate', without offering further information. However, others either disagreed with one or more specific aspects of the proposals, or they suggested additional categories - while nonetheless expressing general support for what was proposed. Any specific comments made within this group overall were made by just one person.

7.10 In relation to each of the three proposed categories, this group suggested:

• Regarding a person with a long-term incapacity: if such a person had made an earlier decision to opt in, this earlier decision should continue to be respected even if the person had a long-term incapacity at the time of death. There was also a view that adults with incapacity should only be treated as exceptions to deemed authorisation if this had taken place before the opt out system came into operation.
• Regarding children under a certain age: there were views that age 12 was too young for children to be able to self-authorise; there was also a view that any wish by a child to donate their organs after death should involve a discussion with the child's parents.
• Regarding those who were resident in Scotland for less than 12 months: there was a view that the period of restriction should be shorter than 12 months.

7.11 A small number of addition points were raised by this group: (i) there was a query about whether individuals holding certain religious beliefs should be included in the list of excepted categories; and (ii) it was noted that the proposal not to apply deemed authorisation in relation to these categories was consistent with current practice. Regarding the latter point, the individual who raised it therefore questioned the need to change the current system given the time and training that would be required to implement a new system, and the potential for this to take away focus and resource from current practice.

Respondents' reasons for disagreeing with the excepted categories

7.12 Among those who indicated that the proposed excepted categories were not sufficient, the main reason given was that the respondent was opposed in principle to a soft opt out system. These respondents believed that in all cases, explicit authorisation should be required for organ or tissue donation. Some within this group also believed that the proposals set out in the consultation paper had the potential to cause distress to grieving families after the death of a loved one if explicit authorisation were routinely sought for people in the excepted categories.

7.13 Other comments focused on one or more of the three proposed excepted categories, and in each case a range of (often conflicting) views were expressed. Some respondents clearly supported an opt out system and felt the proposals were too restrictive, while others were opposed to an opt out system and felt the proposals were unethical.

Category 1 - People lacking capacity

7.14 Regarding the proposal to require explicit authorisation for someone who, over a period of time before their death, did not have capacity to take a decision on donation, the following views were expressed:

• Some respondents commented specifically on the issue of 'the period of time before death'. In most cases, these respondents thought that if the law on organ and tissue donation changed and an individual chose not to opt out during a period of years after the law changed, then, even if they later lost the capacity to make decisions, deemed authorisation should continue to apply. Thus, only people who had lost the capacity to make decisions before the system came into operation should require explicit authorisation.
• Related to this, any previous decision to opt in (explicit authorisation recorded earlier) should continue to be honoured even if an individual loses the capacity to make decisions later in life.

7.15 In contrast to these views, other respondents thought that people without the capacity to consent prior to their death should not be considered for organ or tissue donation under any circumstances.

Category 2 - Children under a certain age

7.16 Respondents' comments in relation to the second proposed excepted category did not always relate directly to the question asked. These comments tended to focus on two issues:

• The age at which a child can self-authorise: Most of those commenting on this particular issue referred to the comment in the consultation paper that children of 12 years old or over are able to self-authorise their own donation. In general, respondents who commented on this thought that age 12 was too young for a child to make their own decision to donate their organs or tissue. They thought that parental authorisation should be required for children up to age 16 or 18, regardless of the child's wish to opt in. The contrasting view, expressed less commonly, was that parental authorisation should not be required at all for a child over age 12 if the child had opted in to the ODR or otherwise explicitly expressed a wish to donate their organs or tissue.
• The age at which deemed authorisation would apply: While some respondents agreed with the consultation paper that deemed authorisation should apply from age 16 and above, others thought it should be increased (to 18 or 21). One organisational respondent commented that the Welsh legislation defines a 'child' as a person under 18, and does not permit deemed authorisation until age 18. Some respondents went further, arguing that explicit parental authorisation should always be required for children (including up to age 18 or 21) regardless of any explicit authorisation from the child. Less commonly, it was suggested that children under 18 should be entirely exempted from organ or tissue donation unless they had consistently expressed - over a period of years - the desire to be a donor.

7.17 There was also a view, expressed much less often, that children of all ages should be included in the soft opt out system and deemed authorisation should apply in all cases unless their parents had previously opted out on their behalf.

7.18 Respondents also highlighted disparities between these proposals and other legislation (for example, the age at which children can vote, drive, drink alcohol, etc.).

Category 3 - People resident in Scotland for less than 12 months

7.19 The proposal to require explicit authorisation for people resident in Scotland for less than 12 months attracted the largest volume of comments. This may be partly because there was no follow-up question in the consultation about this group, whereas additional questions were included in relation to adults with incapacity (Question 7), and donation by children (Question 8). (See below.)

7.20 Once again, a wide range of views were expressed. These generally focused on: (i) the potential difficulties of obtaining explicit authorisation from the family members of people who may be relatively recent arrivals in Scotland; (ii) the residence status of students in Scotland; (iii) cultural / religious differences in other countries coupled with communication challenges where a person speaks another language; and (iv) the period of time for which explicit authorisation would be required among people who have recently become resident in Scotland. Each of these themes is covered briefly below.

• Potential difficulties of obtaining explicit authorisation from family members living overseas: Respondents highlighted the practical difficulties of obtaining authorisation for organ donation from family members who may live overseas, particularly where telecommunications infrastructure is poor, or where English is not spoken as a first language.
• Status of students in Scotland: Some respondents commented that the example given in the consultation paper regarding students was potentially confusing. These respondents noted that students studying in Scotland from outside the country may not see themselves as resident in Scotland and so not appreciate the requirement to opt out. They also highlighted the potential for distressing misunderstandings with the families of these students. Other respondents believed that the consultation paper was contradictory in relation to students who may not be permanently resident in Scotland over a 12-month period. The general view was that, unless a student had opted in to donation, their families should always be contacted for authorisation, regardless of how many years the student had been studying in Scotland.
• Cultural / religious differences and language barriers: Some respondents focused on the importance of giving due consideration to the cultural and religious views of people from different countries. It was also noted that 'foreign nationals' living in Scotland may not have sufficient English language skills to be aware of the requirement to opt out if they did not want their organs or tissue to be donated. It was suggested that advice should be sought from relevant foreign consulates in relation to the question of organ donation and there was a view that the application of deemed authorisation could, in certain circumstances, lead to 'diplomatic incidents'. There was also a suggestion that, unless it could be demonstrated that an individual had been given information in their own language about the opt out arrangements in Scotland, then deemed authorisation should not apply regardless of how long the person had resided in Scotland.
• Period of residence: Some respondents commented on the timeframe of 12 months for explicit authorisation. Some wanted a longer timeframe for people who had moved to Scotland from elsewhere (up to 3 years was suggested), while others wanted a shorter timeframe (3 months was suggested).

7.21 Less often, respondents argued that the last category was irrelevant, that the residency check was unnecessary, and that deemed authorisation should apply for any individual (including a tourist) who died in Scotland. Some respondents commented that they personally had opted in to the ODR in Scotland, and so would wish and expect that if they died while travelling overseas that their organs should still be donated. Others noted that if an overseas student, migrant or other visitor to Scotland had opted in to organ donation in their own country, that this explicit authorisation should be respected if they died in Scotland.

7.22 There were also suggestions that any change in the law in this area would require a mechanism for proactively informing all new Scottish residents about the need to explicitly opt out if they do not want their organs or tissue to be donated. Any Code of Practice developed for an opt out system should take account of a more mobile population.

7.23 Finally, respondents also noted the implications and potential for confusion resulting from different legislation on organ and tissue donation in the different countries of the UK.

Other groups for whom explicit authorisation should be required

7.24 Some respondents suggested additional categories of people for whom explicit authorisation should also be required, or they queried whether explicit authorisation would be required for these groups:

• People who are disabled from birth who cannot make a decision for themselves
• People with learning disabilities who may have the capacity to make some decisions, but not fully understand the concept of organ donation
• Looked after children
• People with certain religious beliefs (e.g. those opposed to blood transfusions, etc.)
• People who are not voluntarily resident in Scotland (e.g. prisoners, or members of the armed forces stationed in Scotland)
• People who are not UK citizens with permanent residency status in Scotland.

Other views

7.25 A view - expressed much less often - was that there should be no excepted categories, and that deemed authorisation should apply in all cases.

Adults with incapacity (Q7)

7.26 As noted in paragraph 7.2 (first bullet point) above, it was proposed that deemed authorisation provisions should not apply in relation to adults who, over a period of time before their death, did not have capacity to take a decision on donation. Question 7 of the consultation was an open question which invited views about the circumstances in which an adult should be viewed as not having the capacity to make their own decisions about donation.

7.27 Altogether, 610 respondents replied to this question - 28 organisations and 582 individuals - and there was a great deal of consistency in the comments made.

7.28 The most common view was that the Adults with Incapacity (Scotland) Act 2000 should provide the basis for decisions regarding capacity - and that the rules for determining capacity to decide about organ and tissue donation should be the same as those used to determine capacity in other contexts (such as capacity to decide about medical treatment). Respondents often made reference specifically to the 2000 Act, while others referred to it indirectly, suggesting that anyone who had a legal guardian, or who had given another adult power of attorney over their affairs should be considered to be an adult with incapacity.

7.29 Occasionally, respondents referred to existing mental health legislation, and suggested that anyone who had been 'cared for', 'detained' or 'sectioned' under mental health legislation should also be considered to not have the capacity to make their own decisions about donation.

7.30 It was also relatively common for respondents to identify particular conditions or illnesses which, they considered, could affect an individual's capacity to make their own decisions. These included, for example:

• Dementia and other similar illnesses (including Alzheimer's disease)
• Severe learning disability (including co-morbid learning disability and autism)
• Serious mental illness (ranging from depression to schizophrenia)
• Neurological disorders (such Parkinson's disease or multiple sclerosis)
• Brain injury or brain damage.

7.31 More generally, respondents suggested that 'any form of cognitive impairment', 'severe mental disability', being 'not of sound mind', or having 'additional support needs' were all circumstances in which a person should be viewed as not having capacity to make their own decision about donation. Others discussed the loss or lack of ability to communicate or to understand communication. Less often, respondents suggested that certain forms of physical disability may also constitute circumstances in which a person may be viewed as not having the capacity to make their own decisions.

7.32 While respondents generally agreed about the circumstances in which a person would be seen as lacking capacity, there were conflicting views about what should happen upon that person's death with respect to organ and tissue donation.

7.33 Some respondents agreed with the proposal in the consultation paper that explicit authorisation should be sought from the individual's family - or guardian, advocate, or person with power of attorney - in these circumstances.

7.34 However, other respondents commented that clarification was needed regarding this proposal. Specifically, they noted that if an adult was viewed as not having the capacity to make their own decision at the point at which an opt out system was introduced, then they should not be subject to deemed authorisation. However, some argued that once an opt out system was introduced, if an individual had sufficient opportunity (over a period of years) to choose to opt out, but did not do so, then, if that individual subsequently lost capacity (due to an accident or illness much later in life), then it could be argued that deemed authorisation should apply. This would be consistent with current arrangements whereby a decision to opt in results in organs being donated even if a person subsequently loses capacity before they die. In such cases, the subsequent loss of capacity is considered to be irrelevant.

7.35 It was suggested that, whatever time frame is specified for the period of incapacity before a person's death, that there is flexibility and that medical professionals have the discretion to decide whether, in particular circumstances, explicit authorisation should be required.

7.36 Others expressed concern about this proposal, noting that an individual's capacity may fluctuate throughout their life, and may be specific to certain tasks or types of decisions. These respondents commented that an opt in system was preferable for this reason, as it would be more straightforward to determine the wishes of an individual who may lack capacity at the time of their death.

7.37 There were also two less common opposing views: (i) that there are no circumstances in which a person with incapacity should require explicit authorisation from a family member or other individual; and (ii) no organs should be taken from an individual who lacks capacity at the time of their death under any circumstances.

Age at which deemed authorisation would apply in children (Q8)

7.38 In the current opt in system, children aged 12 and over are able to self-authorise donation. If there is no self-authorisation in place when the child dies, a parent may be asked if they wish to authorise. For children under 12 the donation can only proceed with parental authorisation. The consultation sought views on the age at which deemed authorisation should apply to children if an opt out system is introduced. Question 8 asked 'Under what age do you think children should only be donors with explicit authorisation?'

7.39 Altogether, 795 respondents replied to this question - 29 organisations and 766 individuals. Of these, the largest proportion of both organisational and individual respondents thought that explicit authorisation should be required for all children under 16 (either through self-authorisation or parental authorisation), and that deemed authorisation should apply for young people aged 16 and above. Around half of organisations and two-fifths of individuals expressed this view ( Table 7.2).

Table 7.2: Q8 - Under what age do you think children should only be donors with explicit authorisation?

Respondent type	under 12	under 16	under 18	Other	Total
NHS and / or local authority	3	5	-	1	9
Professional groups and regulatory bodies	-	5	-	1	6
Charity, voluntary sector or patients' rights groups	1	5	2	-	8
Faith groups	-	-	1	5	6
Organisation (total)	4	15	3	7	29
Organisation percentage	14%	52%	10%	24%	100%
Individual respondents	296	319	87	64	766
Individual percentage	39%	42%	11%	8%	100%
Total (organisations and individuals)	300	334	90	71	795
Total percentage	38%	42%	11%	9%	100%

7.40 Among organisational respondents, views differed between faith groups and other organisations on this matter. Most of the faith groups selected 'other' in response to this question, while 15 of the remaining 23 organisations selected 'under 16'.

7.41 Table 7.2 shows that a relatively large proportion of individual respondents (39%) selected 'under 12' in response to this question. However, it is possible that the wording of the question and the explanation given in the consultation paper may have resulted in misunderstanding among some individual respondents. Those who offered further comments in response to this question often appeared to be discussing the age at which a child should be able to self-authorise, rather than the age at which deemed authorisation should apply. Thus, the figures shown for individual respondents in Table 7.2 should be treated with caution.

7.42 If respondents ticked 'other' in response to Question 8, they were invited to specify an age at which deemed authorisation would apply for children. Altogether, 116 respondents provided further comment. Note, however, that this figure includes 11 (mostly organisational) respondents who did not tick any of the choices offered at Question 8, and 34 respondents who ticked one of the first three choices. The comments of this latter group are summarised briefly below at paragraph 7.48. However, the main focus in the discussion below is on those who ticked 'other' or who did not tick any of the options at Question 8.

Views of those who favoured an 'other' threshold age for deemed authorisation

7.43 As mentioned above, respondents' comments indicated that there may have been some misunderstanding of Question 8. Respondents often discussed the age at which a child could been seen as having the necessary maturity to make decisions about organ donation, and whether a parent should (or should not) have the right to overturn a decision taken by a child to opt in. Therefore, if respondents suggested a particular age, it was not always clear whether they intended this to be: (i) the age at which a child could self-authorise; (ii) the age at which a child could self-authorise without parental authorisation and despite parental objection; or (iii) the age at which deemed authorisation should apply for a child.

7.44 Notwithstanding this lack of clarity, there was nevertheless a range of views on this issue. At the two extremes, there were some who thought that all children from birth should automatically be deemed donors unless explicitly opted out by the child or the child's parents and, at the other end of the scale, those who thought that there should be no organ donation by children at all. The views of most respondents, however, lay somewhere between these two stances, and there was a general agreement that children should have the choice and opportunity to opt in. Respondents argued that the age at which this is appropriate may vary from one child to another. While it was generally thought that 12 years was reasonable, there were also suggestions that children of almost any age could make this decision if they were given appropriate information and support. Less commonly, respondents suggested that children should only be able to opt in at a later age (14, 16 or 18), or they argued that it was not possible to specify an age for self-authorisation given the wide variability in maturity and understanding that there may be among children of the same age.

7.45 There was disagreement between respondents about:

• The age up to which parental authorisation should be required: The most common view was that parental authorisation (in effect, allowing parents to overrule a child's decision) should be required up to age 16; however some respondents argued that it should be required up to age 18, 21 or 25).
• The age at which deemed authorisation would apply: The most common view was that deemed authorisation should apply from age 16; however, views ranged from 'deemed authorisation should apply for all children' to 'deemed authorisation should never apply'.

7.46 Some respondents suggested, more generally, that the threshold age for deemed authorisation should be consistent with other age limits for decision making by children. In relation to this point, it was noted that the Age of Legal Capacity (Scotland) Act 1991 confers legal capacity on children from the age of 16, but also allows under-16s to consent to medical treatment where the child is deemed by a qualified medical practitioner to understand the nature and possible consequences of treatment. However, as mentioned above ( paragraph 7.16, point 2), it was also noted that in the Welsh legislation, the age threshold for deemed authorisation was 18.

7.47 Respondents raised a number of other relevant points in their discussions of this issue. These points were mostly raised by organisational respondents who had not ticked one of the boxes at Question 8:

• If the legislation changes with respect to organ and tissue donation and a soft opt out system is introduced, this legislation should take into account that the nearest relative for a young person aged 16 might be a spouse, and not a parent.
• The nature of organ and tissue donation by children may be slightly different to that of adults. For example, it was noted that children as young as 32 weeks gestation could donate heart valves, those from age 2 could donate corneas, etc.
• A great deal of effort has been made in Scotland to teach young adults about organ donation. As a result, it was noted that Scotland has the highest proportion of young people under 18 on the ODR in the UK.
• In relation to other medical treatment, a young person who has the ability to consent (or opt in) to a straightforward, relatively risk-free treatment may not necessarily have the capacity to consent to complex treatment involving high risks with potentially serious consequences. Their ability to consent may also be affected by physical and emotional development, and by changes in their health or treatment.
• It was important that the implications of the United Nations Convention on the Rights of the Child were considered, and that children were supported in the process of exercising their rights and making their views known.

Views of respondents who selected 12, 16 or 18

7.48 This group of respondents was not invited to give further comment; nevertheless, some among this group did so. Again, it was apparent in the comments that some respondents may not have understood that the question was asking about the age at which deemed authorisation should apply in an opt-out system.

7.49 Organisational respondents, however, did generally make explicit reference to the issue of deemed authorisation, stating that age 16 (as proposed in the consultation paper) was appropriate. Respondents gave the following reasons in support of their views:

• The legal age of capacity in Scotland (i.e. the age at which people are treated as adults with regard to consenting to medical treatment) is age 16
• Children below the age 16 were unlikely to be aware of, and understand, the deemed authorisation requirements.

7.50Three other main themes in these comments related to:

• The role of the family: A range of views were expressed including that: (i) a child's choice to opt in at age 12 should be respected even if a parent objected; (ii) a child should be able to donate their organs at any age with parental consent; and (iii) a child (up to 12, 16 or 18) should ONLY be able to donate their organs with parental consent.
• Capacity of a child to understand about organ donation: Most often, respondents discussed this issue in relation to the age at which a child should be able to self-authorise. While some thought a child of almost any age could understand about organ donation if it was properly explained - and so should be given the right to self-authorise - others thought that safeguards should be built in to ensure that, if a child opts in to the ODR, they understand the implications of this. There was also a suggestion that the 'Fraser-Gillick guidelines could apply'. ^[6]
• Circumstances in which deemed authorisation could be set at age 12: Finally, there was a view that the age at which deemed authorisation would apply could potentially be set at age 12 if all pupils received information through schools about donation and how it applies to them prior to this age.

Authorising organ and tissue donation for looked after children (Q9)

7.51 The consultation paper explained that, where decisions about organ donation were made on behalf of children, it would be the child's parent(s) or another person with parental responsibilities and rights who would decide. Under current legislation, if a child is looked-after, the local authority with parental responsibility cannot currently authorise donation if no parent is available. It was suggested, however, that this restriction could be reconsidered, and it was noted that in England and Wales, local authorities may authorise donation for children in their care if no parent is available. The consultation (Question 9) asked respondents for their views on this issue.

7.52 Altogether, 804 respondents addressed this question - 28 organisations and 775 individuals. The largest proportion of both organisational and individual respondents thought that local authorities should be able to authorise donations in these circumstances. However, a relatively large minority of both groups (25% and 29%, respectively) thought that local authorities should not be able to authorise donations in these circumstances. Moreover, among organisations, respondents were more likely to either disagree or indicate uncertainty in response to this question than to indicate support ( Table 7.3).

Table 7.3: Q9 - For children who are in care, what are your views on allowing a local authority which has parental responsibilities and rights for a child to authorise donation for the child if no parent is available?

Respondent type	They should be allowed to authorise donation of a child's organs or tissue in those circumstances	They should not be allowed to authorise donation of a child's organs or tissue	Don't know	Total
NHS and / or local authority	4	2	5	11
Charity, voluntary sector or patients' rights groups	5	-	2	7
Professional groups and regulatory bodies	3	2	-	6
Faith groups	1	3	1	5
Organisation total	13	7	8	28
Organisation percentage	46%	25%	29%	100%
Individual respondents	445	227	103	775
Individual percentage	57%	29%	13%	100%
Total (orgs and individuals)	458	234	111	804
Total percentage	57%	29%	14%	100%

7.53 Question 9 was a closed question, with no follow-up question inviting respondents to provide further details about their views. However, four individual respondents included comments at Question 15 in relation to this question, and 11 of the organisational respondents who submitted their responses by email also provided comments. Five of these organisational respondents did not select any of the response options offered at Question 9, and their views on this question could not be inferred. Of the five NHS / local authority respondents who offered comments, three answered 'don't know' in response to this question and two did not tick any of the boxes.

7.54 The comments made by organisations in relation to this question often indicated qualified support - i.e. support with caveats.

Views of NHS / local authority organisations

7.55 NHS / local authority organisations thought that if the law were changed to permit a local authority to authorise donation on behalf of a child in care where the parent is deceased or absent, such authorisation should only occur if the following conditions were met:

• The person giving the authorisation would need to know the child well - to ensure that donation is something that they or their family would not have opposed, but also to be able to provide the necessary information to ensure that the donation was safe.
• If the child has any living relatives, they should be involved in the donation process where possible and appropriate.
• The local authority should have clear documentation that neither the child nor the family had previously expressed wishes against donation.

7.56 A slightly different perspective was voiced by the (one) health and social care partnership which offered comments on this question. This respondent thought that:

• If a local authority is acting as defacto parent for a child, the law should be applied in the same way as for any other parent.
• There should not be an expectation that local authorities should ask every child or young person in the care what their preferences would be in relation to organ and tissue donation, nor should there be a requirement that this information is recorded and kept up-to-date. There was a concern about the potential for significant and unjustified bureaucracy to be created.
• Rather than giving the local authority the responsibility to make a decision on a case by case basis, it should be stated explicitly in the legislation what should happen in the cases of children in care.

Views of professional groups and regulatory bodies

7.57 Five professional groups / regulatory bodies offered comments. In three of these cases, the respondent indicated that local authorities should be allowed to authorise organ donation on behalf of a child where the parent is not available. This group made the following suggestions:

• The process for authorising donation of organs from a child who had died in care should not be the sole responsibility of any one local authority employee.
• Appropriate training should be provided to local authority staff to enable them to fulfil this role.
• Where a child had chosen to opt in, the local authority should take steps to facilitate the child's wishes.
• While local authorities should not be prohibited from authorising organ and tissue donation from a child who had died in care, it was accepted that donations may not necessarily proceed, and that those decisions should be taken by the relevant specialist organ donation team.
• Older siblings, grandparents or other close relatives could be asked to provide the required authorisation if the child's parents are not available. Moreover, the position of long term carers who hold parental responsibilities and rights under a permanence order should also be considered.
• If the intention is to give local authorities the power to authorise donation on behalf of a child where a parent is unavailable, it is important to be clear about the definition of 'unavailable'.

7.58 The point was also made that there may be other circumstances where local authorities could be called upon to make decisions about donation which relate to children who are not 'looked-after' - for example where a child was with his parents in a car accident, and although the parents have survived, they may not (temporarily) be able to authorise donation.

Views of other respondents

7.59 Among the very few other respondents who commented on this issue (four individuals, and two organisations), the following points were made, some of which echoed those discussed above:

• If a child has opted in or out of the ODR, their wishes should be respected if they die while in local authority care.
• If the child has not self-authorised and is under the age of 16, decisions about organ donation should be scrutinised through a full Child Rights and Wellbeing Impact Assessment ( CRWIA) to ensure that the decision is consistent with the UN Convention on the Rights of the Child.
• The person(s) making the decision about organ donation for a child in care should be someone who knows the child well - a foster parent or a member of staff in the care home / school which they are resident in.
• Safeguards should be put in place for local authorities when making such decisions. This might include the involvement of a legal professional.
• If the child has a particular religious or ethnic background, the decision to authorise donation should be taken only after discussion and agreement with leaders / authorities in the relevant community.