Hum. Reprod. Advance Access originally published online on February 7, 2008
Human Reproduction 2008 23(4):904-911; doi:10.1093/humrep/dem416
Attitudes towards gamete donation among Swedish gynaecologists and obstetricians
1 Department of Women’s and Children’s Health, Academic Hospital, Uppsala University, SE-751 83 Uppsala, Sweden 2 Division of Obstetrics and Gynaecology, University Hospital, Linköping, Sweden 3 Department of Caring Sciences and Sociology, Gävle University, Gävle, Sweden 4 Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
5Correspondence address. E-mail: agneta.skoog_svanberg{at}kbh.uu.se
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Abstract |
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BACKGROUND: Assisted reproductive technology (ART) legislation in Sweden has undergone a gradual transformation from being fairly restrictive when first introduced to becoming more permissive in recent years. Regarding gamete donation, Sweden became the first country to pass legislation about disclosure by establishing a child’s right to find out the identity of the gamete donor once the child has reached maturity. Our aim was to investigate attitudes towards gamete donation among Swedish gynaecologists and obstetricians.
METHODS: A questionnaire was mailed to all gynaecologists and obstetricians listed from a commercial register of all working in Sweden. Among 1230 eligible gynaecologists/obstetricians, 854 (69%) answered the questionnaire.
RESULTS: In general, the majority of Swedish gynaecologists/obstetricians had positive attitudes towards gamete donation. Although a majority advocated openness regarding informing the child that he or she was conceived by making use of gamete donation, 
40% opposed allowing the child to receive any information about the donor when the child has reached maturity. Even though Swedish legislation has allowed sperm donation to lesbian couples since July 2005, one-third of the gynaecologists/obstetricians opposed donation to lesbians.
CONCLUSIONS: The results indicate that the gynaecologists’/obstetricians’ negative attitudes towards disclosure may influence patients’ ability to discuss their thoughts and feelings about donation. This may also have a negative impact on donor recruitment as well as on the extent of methods made accessible within ART.
Key words: attitudes/fertility/donation/disclosure/gynaecologists
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Introduction |
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Laws and regulations regarding assisted reproduction with donated gametes vary considerably between countries, even between countries with a close proximity and similar cultural basis. Assisted reproductive technology (ART) policy in Sweden has undergone a gradual transformation from a fairly restrictive position to a more permissive one (Burell, 2005
; Ministry of Health and Social Affaires 2001/02:89). Since July 2005, lesbian couples, whether cohabiting or living in a registered partnership, have been allowed by law to have access to infertility services. The remaining restrictions in Sweden are the ban on embryo donation, surrogacy and treatment of single persons.
In Sweden, donors are anonymous to the recipient couple unless the couples provide their own donor. Since the passage of the 1985 legislation, offspring resulting from donation have the legal right to receive identifying information about the donor when they reach maturity (Minitry of Health and Social Affaires 1984:1140; SOSFS, 2006:10 (M)). A special donor record must be prepared and kept on file for at least 70 years. In cases of children who have learned how they were conceived and wish to know the donor’s identity, the social authorities are obliged to assist in providing information about the donor. A necessary prerequisite for offspring to exercise this legal right is that their parents disclose the fact that they were conceived making use of donation. Thus, disclosure to donation offspring may be regarded as a two-step process including (i) information about being conceived with donated gametes and (ii) information about the identity of the donor. While there is evidence that many donation parents and the general public support the first step, there is generally less support for the second step (Leiblum et al., 1997; Nachtigall et al., 1997; Golombok et al., 1999; Gottlieb et al., 2000; Lindblad et al., 2000; Partrick et al., 2001; Skoog Svanberg et al., 2003) and this may also be the case for some of those who have the responsibility for providing treatment service. In Sweden, substantial attention has been given to the legal rights and responsibilities of the different parties, especially those of the child born as a result of the use of assisted reproduction. Research has shown that compliance with the Swedish law on disclosure has been moderate among families who have undergone treatment with donor insemination after the 1985 legislation (Gottlieb et al., 2000). Gottlieb and co-workers showed that only 11% of parents had told the child of her/his genetic origin and that an additional 41% intended to tell the child at some future time. In a follow-up of this study (Lalos et al., 2007), a majority of participating parents had told their children about the donation, but less than half had informed their children about their right to obtain identifying information about the donor.
A recently published study from the USA (Shehab et al., 2007) analysed the decision-making process in couples who conceived using donor gamete donation and found that mental health professionals unanimously encouraged disclosure, whereas the advice given by physicians concerning disclosure was quite variable. Though disclosure was advocated by some doctors, they were the only professionals who encouraged non-disclosure or supported the idea of non-disclosure as an option for the couple. Previous research has shown that the lack of agreement among physicians regarding the developmental process and quality of the guideline was low; a plausible explanation for these findings was that physicians are more likely to accept guidelines developed by their own speciality organization than by the government (Cabana et al., 1999; Kasje et al., 2002).
It has been argued that the Swedish doctors’ initial opposition towards the 1985 legislation may have contributed to reproductive tourism among Swedish patients (Daniels et al., 1995) and to non-disclosure to offspring (Burell, 2005). The main criticism was that this legislation would lead to a decline in the numbers of men coming forward to donate semen in Sweden. However, data from an investigation in 1995 showed that there was an increase in number of donors being recruited, suggesting that the possibility of future contact by genetic offspring did not have the predicted negative impact on the availability of donors (Daniels et al., 1995) but the demographic characteristics of semen donors did change (Daniels, 2007).
Legislation and guidelines aim to improve clinical practice but are not self-implementing. Previous research has identified a number of barriers for physicians’ implementation of different treatment guidelines (Cabana et al., 1999). Attitude-related barriers identified for gynaecologists’ implementation of specific subfertility guidelines included lack of self-efficacy regarding physician–patient communication and low outcome expectancy (Haagen et al., 2005). Gynaecologists have been reported to agree that new ARTs have major social consequences and that gynaecologists play a major role in changing social reality (Kaplan et al., 2004). A great majority also agreed that the interests of the unborn child must be taken into consideration.
In Sweden, 59% of gynaecologists/obstetricians are women and 41% are men, and 71% are over 50 years of age. These characteristics may have an influence on information provision, counselling and referral to investigation and ART treatment. Although gynaecologists/obstetricians in Sweden probably constitute important discussants and informants with regard to treatment with donated gametes, there is a lack of knowledge regarding their attitudes towards different aspects of gamete donation. The objective of the present survey was to study attitudes towards different aspects of gamete donation among gynaecologists and obstetricians in Sweden. In particular, we sought to determine whether such attitudes differ with regard to gynaecologists’/obstetricians’ gender, age or level of experience of patients with infertility problems.
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Materials and Methods |
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Participants
A commercial register of all gynaecologists and obstetricians working in Sweden was used to identify potential participants. In total, this list included 1333 names and addresses. Of these, 37 were excluded since they had previously been approached regarding participation in an attitude study at a congress for IVF (data of which will be presented elsewhere). There were 66 letters returned since the physician had moved abroad, was dead, had retired or could not be located. In all, 1230 received the questionnaire and 854 (69%) participated in the study.
Procedure
A study-specific questionnaire was posted to the gynaecologists and obstetricians by mail during autumn 2005. Included with each questionnaire was a cover letter stating the purpose of the study and guaranteeing confidentiality. A reminder was sent after three weeks.
Instrument
Participants were asked to provide both personal and professional background information (Table I). We assessed attitudes by asking respondents to indicate their agreement with items on a 5-point Likert scale. Tables II and III present data for the collapsed categories ‘Agree’ (strongly agree and agree somewhat), ‘Disagree’ (disagree strongly and disagree somewhat) and a ‘Neutral’ response (neither agree nor disagree). The items were drawn from the literature (Skoog Svanberg et al., 2003) and from clinical experience and formed three categories: attitude towards supporting anonymous donation, attitude towards known gamete donation and attitude towards disclosure to offspring. Five single items assessed attitudes concerning specific regulations on gamete donation and information provision to donor/recipient (Tables II and III), and five questions concerned participants’ opinions regarding financial compensation for donors and age limits for donors and recipients. Several of the items have previously been used in a large-scale survey on public opinions regarding oocyte donation in Sweden (Skoog Svanberg et al., 2003).
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Statistical analyses
The chi-square test was used to test differences in distribution between age, gender and experience of infertility patients (Tables II–IV), and the independent Student’s t-test was used to test group differences regarding attitudes towards minimum age and maximum age for donors and recipients as well as to the financial levels (Table IV). In order to estimate the ‘combined’ effect of age, gender and experience on attitudes towards gamete donation, multiple logistic regression analyses were performed. The dependent variables (i.e. attitudes) were dichotomized into: ‘negative’ and ‘positive and neutral’, respectively. The independent variables were age (<50 years versus
50 years), gender (male versus female) and experience (‘daily/weekly’ versus ‘monthly or less’). However, as the results of these additional analyses were substantially the same as the results presented, these analyses are not presented.
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The study was approved by the regional Ethics Committee for Human Research of the Faculty of Health in Linköping.
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Results |
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Background data for the participating gynaecologists and obstetricians are presented in Table I. Among the participants, 56% of the women and 24% of the men were under 50 years of age (P < 0.001). A larger proportion of the participants over 50 had specialized in gynaecology (P < 0.001). There were no gender differences regarding how often the participants saw patients with infertility problems.
Attitudes regarding information provision in gamete donation
Table II displays the participants’ attitudes towards information provision to donors and recipients and disclosure to offspring. A majority of gynaecologists/obstetricians thought that donors should not be entitled to information about the recipients’ education and private interests, but 40% were positive towards providing information about the donor to the parents. A vast majority was in favour of parents being honest with the child with regard to his/her genetic origin. Of the men, 45% and of the women, 36% opposed providing the offspring with information about the donor when the offspring had reached adulthood. Female gynaecologists/obstetricians were more positive towards informing donors of the result of the donation than were male participants (Table II). In addition, female participants and participants <50 years of age reported more positive attitudes towards disclosure to the child than did men and those over 50 years of age.
Attitudes regarding access to and participation in gamete donation
Participants were generally more positive towards anonymous donation (where the donor remains anonymous to the recipient couple) than towards known donation (where the donor is usually a close friend or relative) (Table III). Support of anonymous donation was stronger among those who had professional experience with infertility patients on a daily basis than among those with less frequent contact with this patient group. Young participants and female participants were more supportive of lesbian couples having access to sperm donation than were participants over 50 and male participants. In all, 40% of the participants supported embryo donation, and this support was more frequent among men than among women (50% and 37%, respectively).
Perceptions of age limits and financial compensation
The mean minimum and maximum ages suggested by the gynaecologists and obstetricians were 23 and 48 for sperm donors, 23 and 37 for oocyte donors, and 23 and 41 for oocyte recipients. Men and young participants accepted lower age limits for donors and recipients than did women and those over the age of 50 (Table IV).
About one-third of participants reported that female and male donors should not be reimbursed at all. This view was more common among participants over 50 years of age than among young participants. There was a tendency towards the position that oocyte donors should be compensated more generously than sperm donors (Table V).
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Discussion |
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The present results show that a great majority of gynaecologists/obstetricians agreed that donation parents should be honest with their child with regard to his/her genetic origin; these results support earlier findings from paediatric nurses (Sydsjö et al., 2007
) and the general public in Sweden (Skoog Svanberg et al., 2003). However, more than 30% of physicians in the present study did not support disclosure of any information about the donor to offspring even when they reached adulthood. Similarly, 24% of nurses in child health-care centres in Sweden did not support that offspring should receive identifying information about their donor (Sydsjö et al., 2007). Although the reasons for these attitudes are not evident, between 10% and 20% of physicians and nurses expressed concern that disclosure concerning the donation might disturb the child’s relationship with his/her parents and that contact with the donor might be harmful for the offspring or the family. However, only a few follow-up studies have so far been carried out regarding openness and disclosure among gamete donor offspring and their families. Further research is needed to add more knowledge in this issue for all parties involved, including caregivers.
ART-legislation in Sweden has undergone a transformation from being fairly restrictive to becoming more permissive. Sperm donation was allowed under Swedish law in 1985 and for many years thereafter oocyte donation was not allowed. This difference was regarded by many as an unacceptable discrimination between gamete donation from males and females. Attitudes towards society, life style and human behaviour all played a part in discussions concerning what should or should not be allowed. A position against disclosure largely stemmed from a desire to protect the child, a belief that there really was no need to tell the child, and a desire to protect the non-genetic parent. The basic reason for passing laws about this kind of practice has been to ensure that the child-to-be will get the true information about their genetic origin with the possibility to later be able to find out about and contact the donor. The opposite must be seen as an infringement of the child (Ministry of Health and Social Affaires 2001/02:89). The arguments for telling the child were founded on the premise that children must be given the opportunity to base their life on the truth about their genetic origin and that any other approach would entail an infringement on the children’s personal integrity (Murray et al., 2003). In our study, about half of the gynaecologists/obstetricians were opposed to giving information about the donor to the child during childhood, and more than 30% did not support disclosure of any information about the donor to the child even when the child had reached adulthood. However, we found that females were significantly more positive towards both giving information about the donation to the child and providing access to identifying information at maturity. This is in line with the results of a large public survey of women’s and men’s attitudes towards providing or not providing information to offspring, which found that women were more positive towards disclosure (Skoog Svanberg et al., 2003).
The finding that gynaecologists/obstetricians were equally likely to support a man and a woman who wanted to become a donor was surprising considering the physical ordeal and medical risks for oocyte donors. One quarter of physicians reported that they would not support an individual close to them to participate in known gamete donation. This is in line with the preferences of most recipient couples; they believe that the relationships will become more complicated if the donor and the recipient couple know each other (Frith, 2001). Although most countries continue to support non-identifiable donation, there are indications that an increasing number of donors are willing to be identified and that public attitudes towards gamete donation are changing over time (Fasouliotis and Schenker, 1999; Greenfeld, 2002).
About 40% of the participants in the present study supported embryo donation, which is not permitted in Sweden at present, and males supported embryo donation to a higher degree than females. On the other hand, one-third of all Swedish gynaecologists/obstetricians were opposed to embryo donation. The disposal of frozen embryos is a significant and frequently unresolved issue for couples in many countries. It has earlier been argued that the major concern of IVF couples’ willingness to donate embryos to other couples is their interpretation of ‘embryo status’ (Robertsson, 1995; de Lacey, 2007). Gynaecologists/obstetricians with daily/weekly contact with infertility patients were more positive regarding embryo donation. This finding may reflect the fact that they are more exposed to infertile patients’ needs and that they spend more time debating these kinds of issues. This aspect has, however, not been addressed in this study.
More than half of the participants were positive towards lesbian couples having access to sperm donation, and this position was significantly more frequent among gynaecologist/obstetricians under the age of 50. Given that Swedish legislation has allowed sperm donation to lesbian couples since July 2005, it is interesting that almost one-third of the obstetricians/gynaecologists participating in the present study opposed this possibility. The fact that data collection for the present study were performed only a few months after the change of law may have contributed to this finding.
Women and men differed in their opinions regarding age limits in gamete donation, with men accepting significantly lower age limits for donors and female recipients than did women. There was relative consensus regarding the maximum age of female recipients of oocytes, which was in line with the upper age limits stated in Swedish legislation. This result may also reflect biological factors and medical concerns.
The gynaecologists/obstetricians recommended higher financial compensation for oocyte donors than for sperm donors, which is in line with recommendations by the Ethics Committee of the American Society for Reproductive Medicine (2004). The results indicate that the gynaecologists/obstetricians regarded oocyte donors as being worthy of being given substantial financial compensation. However, an interesting finding was that one-third of the participating gynaecologists/obstetricians stated that female and male donors should not be paid at all, and that this view was more pronounced among participants over 50 years of age.
The response rate in the present study was acceptable but, still, 30% of gynaecologists and obstetricians in Sweden did not respond to this survey. We have neither background information on the non-respondents nor do we have information concerning their reasons for non-participation. The high internal drop-out rate for the questions on financial compensation indicates that many found it difficult to answer these questions. The majority of the gynaecologists and obstetricians were working in the public sector where there is no tradition of payments or compensations.
Evidence indicates that clinical guidelines, if actively implemented, can improve the performance of health professionals and promote the delivery of high quality and evidence-based healthcare (Oxman et al., 1995; Grimshaw et al., 2004). It is of great importance for all staff working in this field to be aware that the official guidelines provided by the Swedish National Board of Health and Welfare stress that only couples who intend to talk with their child about her/his genetic origin may be accepted for treatment with donated gametes. By recognizing and acknowledging the intensely personal nature of the disclosure decision, professionals can assist the patient or couple to make a decision that is most consistent with their culture, life experiences, values and relationships. However, according to a recently published Swedish study (Lalos et al., 2007), a majority of parents after donor insemination reported receiving indistinct signals and contradictory messages regarding disclosure from the health-care personnel. Despite guidelines advocating disclosure to offspring, only half of parents reported that they had been partly or directly recommended and encouraged to do so by the staff. Lalos and co-workers report that not all, but a majority of those couples who had been encouraged by the staff to tell their children about the donation had done so, and the researchers conclude that health-care staff had a great impact on the couples’ decision regarding disclosure. Previous research has shown a disparity between disclosure advice given by mental health professionals and physicians to couples undergoing gamete donation, with physicians being the only professionals to support non-disclosure and mental health professionals arguing for disclosure (Shehab et al., 2007). In Sweden, the guidelines for gamete donation state that clinics should provide couples who are candidates for gamete donation with a meeting with a mental health professional in addition to talking to the gynaecologist (SOSFS, 2006:10(M)). Unfortunately, Lalos et al. (2007) did not provide details about the professional background of the staff members by whom parents had received different types of messages.
As concerns assisted reproduction, it is evident that strong societal interests are woven in to the discussion of matters that are very personal and private subjects considered by individuals and couples. Society has a responsibility for controlling those risks that a child may be subjected to. There is an international trend towards non-anonymous donation evidenced in new legislation in the UK and Finland. Therefore, it is of great importance that gynaecologists/obstetricians have an understanding of the application of national law regarding reproductive health and rights. The moral values of health-care professionals may influence their clinical practice without realizing that they are contravening ethical and/or legal boundaries. An understanding of the importance of respecting and promoting reproductive rights is critical for providing current standards of care, including access to information, confidentiality, informed consent and evidence-based practice. The complex psychological, social and ethical consequences of gamete donation place additional pressure on physicians to fully understand all the aspects of gamete donation. The legislation and guidelines in Sweden state that the IVF-doctors should, before starting treatments with gametes have a discussion with the couple about the consequences of gamete donation and in addition, ensure that if the treatment is successful, the couple will tell the future child about the genetic origin.
In conclusion, the majority of Swedish gynaecologists/obstetricians had positive attitudes towards gamete donation in general. However, more than one-third opposed disclosing identifying information about the donor to the child at maturity. To the extent that negative attitudes towards disclosure among gynaecologists/obstetricians are expressed to patients, this may limit patients’ ability to discuss their thoughts and feelings about donation and also, as a consequence in the long run, may have a negative impact on donor recruitment as well as the extent of methods made accessible within ART.
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Merck Serono.
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The idea for the study was developed by all of the authors working together. GS ran the study and KES entered and analysed the data. ASS was primarily responsible for writing the paper. All authors contributed to writing the paper and will act as guarantors.
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References |
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