Department of Social Work, Technological Educational Institute (TEI) of Crete, Estavromenos 71500, Heraklion, Greece
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Abstract |
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Key words: anonymity/assisted reproductive technologies/gamete/infertility/surrogacy
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Introduction |
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The cost involved in medically assisted reproductive therapy is another problem faced by the infertile couple. It is important to know whether the use of ART is a low priority for individualsparticularly where resources are unavailable for costly biomedical technologies with questionable effectivenessand that these technologies, when effective, assist only a very few patients eligible to benefit from them (Ryan, 1996; Griffin and Panak, 1998
; Dickens and Cook, 1999
).
Many countries have undertaken governmental inquiries to propose legal conditions under which ART may be acceptable, and to set limits beyond which their use is unacceptable on ethical grounds. Similar inquiries have been conducted by the World Health Organization Guidelines for ART (World Health Organization, 1992), the Council of Europe and various medical societies to determine the conditions and limits of acceptable professional practice and scientific research, and respect for the dignity of the human being etc (Council of Europe, 1989; Official Journal of the European Community, 1989; Solursh et al., 1997
).
In Greece, the number of individuals seeking infertility-related services has increased substantially during the last decade and there have been parallel advances in infertility treatment options. The first practice of pre-embryo donation was reported at the end of the 1980s. At present, almost 10 years later, the practice of pre-embryo donation still remains limited. Although the demand for ART is significant, there is still a legislative gap concerning these reproductive techniques. According to recent findings (Jones and Cohen, 2001), Greece belongs to a group of nations operating without guidelines or regulations, although practices do not differ greatly from those in nations with legislation or voluntary guidelines. Incorporation of the Human Rights Convention into the Greek Legislation can probably influence the Greek Bioethics Committee in favour of immediate regulation of gamete donation and other types of ART. This attitude may influence the future legislation, as well as governmental and Social Security finances regarding infertility treatment. Another potentially strong influencing factor could be the attitudes of the public.
The purpose of the present study was: (i) to investigate the attitudes of individuals of reproductive age towards different issues concerning gamete donation and surrogacy (GDS) (i.e. donors anonymity and childrens rights, legislative and financial aspects); (ii) to examine to what extent these attitudes are related to their intention to have recourse to GDS (potential sperm/oocyte receiving/donation and surrogacy); (iii) to construct a model explaining potential intention to use GDS and including as explaining factors not only attitudinal indicators, but also the sociological profile of the respondents, their political and religious preferences and their perceived knowledge regarding ART.
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Methods |
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A two-staged conglomerate sampling was conducted, with sub-sampling and stratification of the first units that consisted of the census sections into which Crete is divided. Once the census sections used for sampling had been selected, all households existing in these sections were counted, and the list of homes selected for the sample (two per census section) was drawn by simple random sampling, without replacement, from the total list of homes. When there were several men or women eligible to be surveyed (aged 1845 years) in the household selected, one of them was selected randomly from a number table. This sampling design ensured that the sample was representative of the socio-demography of Crete. The variables used to stratify the sample to be selected were: gender, age, marital status, educational level and occupation.
Methods for collecting information
It was decided to use personal interviews (as a self-report method) and interviewers were controlled for at each stage of the fieldwork in order to prevent potential errors. For that reason the following measures were taken: (i) use of a team of social workers who had received appropriate training, and were supervised by the researcher; (ii) design of an easy-to-use questionnaire; (iii) consent requested and received by all subjects prior to the completion of the questionnaire and after the assimilation of the essential information about the study; (iv) general instructions given on how to complete the questionnaire; (v) protection of subjects rights to anonymity and confidentiality; and (vi) random control of a 10% sample of the questionnaires received.
Questionnaire and measures
A pilot study with a sample of 30 individuals was conducted prior to the present study. For the purposes of the pilot study, the interviewers used an open-ended instrument which included several sections referring to motivational and attitudinal items concerning GDS use/non useinterviewed approximately 30 individuals. This instrument was evaluated by several physicians experienced in ART, as well as by people who had recourse to GDS. The questionnaire used in the study was the result of a combination of an already formed questionnaire (Genuis et al., 1993) and the conclusions of the pilot study. Therefore, a new modified questionnaire was developed. There were about 50 different variables included in this final questionnaire, which can be divided in four sections as follows.
Socio-demographic information
The first section referred to the socio-demographic background of the sample including gender, age, marital status, educational level, profession, number of children, voting preference, church attendance and perceived knowledge level of GDS.
Intention to use donated gametes and/or surrogacy
In this part the intention of men and women to use GDS themselves or encourage another member of the family to act in a similar way was assessed by a question with six items: Supposing you had problems conceiving and your doctor recommended you to use ART. Supposing also that other persons were facing the same problem. Which of the following cases would be more acceptable for you: (a) receive sperm, (b) donate sperm, (c) receive oocyte, (d) donate oocyte, (e) become a commissioning couple, (f) become a surrogate. The respondent had to answer each one of the six cases separately and the response scale was none is acceptable, brother/sister/close relative, friend or someone you know, unrelated healthy person.
The composite score of these six items formed the scale of the intention to use GDS. Responses to the six items were averaged to obtain the score on the scale. Its internal consistency, as measured by Cronbachs alpha, was 0.88. The minimum score on the scale was 0 and the maximum score 6. Higher scores in the total sum mean greater intention to use GDS.
Attitudes toward donated gametes and/or surrogacy
The third section comprised a question with 15 items, resulting from the pilot study and measuring the attitudinal patterns towards receiving/donation, childrens rights and legislation and financial support for the new medical technologies. Each item appeared in a statement form. The interviewees were asked to express their agreement/disagreement with various ethical, legislative and financial aspects regarding GDS, taking into account any personal sensibility, moral, religious, or ideological values. Examples of the specific questions asked are the following: Women who donate and couples who receive an oocyte have the right to anonymity, if they choose so for certain reasons; Men who donate their sperm to a couple will not have any parental obligations or responsibilities for this child; The child born from sperm donation should have the right to know the genetic parents; The State should legislate in favour of GDS among relatives or Social Security Funds must cover the expenses deriving from the use of ART etc. Respondents were asked to rate each statement on a four point Likert-type scale that ranged from 1 (disagree) to 4 (agree).
Hypothetical scenarios
Finally the third section illustrated the following clinical situations (Genuis et al., 1993): An infertile woman conceives following in-vitro fertilization and embryo transfer. She is found to be carrying triplets and is offered selective fetal reduction. The respondent had to choose only one of the following answers related to fetal reduction: (a) selection of an embryo according to its gender; (b) selection of the healthiest; (c) selection to give birth to one of them randomly and hypothetically freeze the rest for future gestation; (d) selection of only one and hypothetical donation of the remaining two for research purposes; (e) would prefer to continue gestation without fetal reduction.
A case of gestational surrogacy was illustrated and the interviewee was asked to express his/her opinion on this scenario. This case is the following: A career-oriented, well-educated, 30-year-old female lawyer wishes to have a child. She plans to have her oocyte fertilized by the screened sperm of an anonymous donor. Because of time constraints, she does not wish to carry the pregnancy herself. It is proposed that the pregnancy will be carried by an acquaintance, who, for a specified price, is willing and keen to do so, deliver the child, and give the child back to the genetic mother, the lawyer.
Statistical analysis
Two statistical procedures were used: principal components analysis (PCA) and multiple linear regression.
A PCA with varimax rotation was used in one initial run for the 15 items measuring the attitudinal patterns concerning GDS. The PCA was chosen for two main reasons: firstly, in order to find the latent factors and secondly, in an effort to reduce the large number of variables. The two factors of the analyses were internally consistent and well defined by the relevant items. Cronbachs alpha was 0.88 and 0.79 respectively for each factor. The final factor solutions for the analyses met four criteria: (i) each one was based on factors with an eigenvalue > 2.0 (ii) each individual item was correlated with the factor concerned at the 0.40 level or above (iii) each item included had no significant correlation with another factor and, (iv) only items with a communality of >0.50 were selected.
The data modelling was constructed through multiple linear regression. The multiple regression method was used to assess the relationship among several independent/predictor variables and the outcome/dependent variable. Multiple regression was selected because the outcome variable was continuous (a composite score of the rates of the intention to use or not GDS). The following variables were entered in the regression analysis as independent variables: (i) Socio-demographic characteristics (gender, age in years, number of children). (ii) Socio-economic characteristics (educational level in years of education, and professional categories such as: scientists and self-employed; traders, shop assistants and officers, etc; blue collar workers, housewives, students). (iii) Voting preference (Socialists, Liberals, and others) and church attendance (ranging from 0 = never to 5 = every Sunday). (iv) Perceived knowledge level of GDS (ranging from 1 = low level to 4 = high level). (v) The two factors measuring attitudes, extracted by the PCA. It should be noted that all the above variables were entered into the equation at the same time.
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Results |
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Hypothetical scenarios
Regarding their attitude towards embryo reduction in case of multiple gestation after IVF (first hypothetical scenario), the participants have selected the following answers: 65% felt that embryos should have protection from destruction; 4% would choose to give birth to a child according to their gender preference; 18% would choose the healthiest and the rest (13%) reported another factor (embryo experimentation, live embryo freezing etc). As to the gestational surrogacy scenario, 86% of the respondents were opposed to that for reasons of mothers convenience; only 8% found the practice acceptable if the woman had a medical problem concerning her capability to carry a pregnancy; 11% reported that they support the womans right to proceed in a similar case.
A model explaining intention to use GDS: the role of attitudes
Table IV provides multiple regression analysis results concerning the relationship between the composite score of the intention to use GDS (dependent variable) and different socio-demographic variablesnumber of children, voting preference and church attendance, perceived level of knowledge about ART, as well as the two attitudinal factor scores described in the methodology (DARCR and LFS). Results from this model suggest that increasing scores for the DARCR factor are positively associated with intention to use GDS (acceptability of sperm, oocyte receiving/donation and surrogacy). Also, increasing scores of the LFS factor are positively associated with intention to use GDS (regression coefficients 0.31 and 1.08 respectively). Among the variables describing the sociological profile of the participants only church attendance affects, at a statistically significant level, the score of the scale measuring intention to use GDS (P = 0.029). It seems that the more religious persons of the sample are less favourably inclined than the others to medically assisted techniques for solving infertility problems. On the other hand, perceived knowledge level of ART did not have any significant effect on peoples intention to use GDS. The above model explains 30% of the total variance of the intention to have recourse to GDS.
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Discussion |
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After a closer examination of the respondents intention to use GDS or encourage a family person to act in a similar way, it is apparent that the publics willingness is rather divided between those who are in favour and those who are not, with exception of surrogacy, where the majority of the respondents were negative about this reproduction technique (Table III). In the light of this finding, researchers have suggested that the lack of adequate information (Papaligoura and Papagounos, 1996
; National Advisory Board on Ethics Reproduction, 1997
; Menezo et al., 2000
; The Bertarelli Foundation Scientific Board, 2000
), the large amounts of money required (Ryan, 1996
; Andersen and Loft, 1998
; The Bertarelli Foundation Scientific Board, 2000
) and some personal beliefs (The Bertarelli Foundation Scientific Board, 2000
) make people hesitate to have recourse to these modern techniques. Similarly, the mass media have influenced peoples decisions, in that sometimes they give descriptions of extreme rather than normal cases (The Bertarelli Foundation Scientific Board, 2000
).
However, it should also be noted that higher acceptance rates of GDS might be obtained if a sample of patients were used instead of the general population. It is rather reasonable that ones intentions may change if one were actually to become infertile.
In Table II another interesting finding is also revealed: the fact that third party reproduction seems to be overall more acceptable in the case of strangers, than it is in the case of family members. In particular, people are more willing to donate gametes (sperm, oocytes) and/or to lend their uterus to a family member than to receive from them. The reverse is true of strangers where they would be more willing to receive than to donate gametes. It seems that the main concern in case of infertility problems is not the preservation of a persons genetic material within the family boundaries, but rather the confidentiality issue, which may be undermined when the fact is disclosed to others, even if these others belong to the family network.
The high refusalexpressed by the respondentsto become surrogates could partly be interpreted as unwillingness on behalf of the donor to proceed in that practice, knowing that it is mandatory to give up the offspring to the recipient after birth and in that way avoiding the emotional shock of separation (Panagopoulos, 1995) and the problematic pregnancy outcomes (Papaligoura and Papagounos, 1996
) or finally, as an attempt to protect the child from being stigmatized (Sozos et al., 2000
). Furthermore, the majority of the respondents strictly rejected the scenario referring to a single career-oriented female lawyer to pay an acquaintance to carry and give birth to her child. It is very likely that many respondents perceived this womans behaviour as extremely individualistic and considered surrogate motherhood under these circumstances as unacceptable. It should be noted, however, that the response to the surrogacy scenario would not have been so extreme if it had been based on a typical infertility case rather than the unusual case of a single woman.
Multiple regression results indicate that increasing scores on the DARCR scale are positively associated with the intention to use GDS. This means firstly that the higher the acceptance of recipients and donors rights to anonymity, the stronger their willingness to use GDS. Indeed, secrecy is a key issue for both non-patient and patient populations. There are a multitude of studies from patient samples, which support the idea that infertile couples who already useor have used in the pastdonated gametes, do not disclose to their offspring or do not intend to tell the child of its origin (Nielsen et al., 1995; Brewaeys et al., 1997
; Gottlieb et al., 2000
). This is a finding reported even by countries like Sweden, where there has been legislation since 1985 giving the child born after donor insemination the right, when adult, to receive identifying information about the sperm donor (Gottlieb et al., 2000
). This data may also mean that not only attitudes determine peoples intentions, but that it is also equally plausible that their positive intentions to use GDS would cause people to want to keep these services confidential. Although interesting, it was not in the scope of the present analysis to explore the impact of intentions on attitudes.
Secondly, the positive relationship between the DARCR factor and the intention to use GDS means also that the more they believe in the donors denial of parental obligations and/or the less they believe in the childs right to know the donor, the more they are in favour of using GDS. This finding is discussed in relation to parental rights and obligations. The major human rights issue concerns the childs right to know their lineage versus the adults right to privacy. In this respect researchers have noted that artificial insemination by donor potentially places the private contractual agreement between adult participants regarding parental rights and responsibilities above the best interest of the child (Elias and Annas, 1986; Brody, 1993
; Jones and Cohen, 2001
). With respect to the respondents intention to use GDS, in the present study, it is obvious that there is a tendency on behalf of the respondents to refuse donors parental obligations and prefer the right to privacy and anonymity. That could be interpreted as a willingness to contribute to the solution of the infertility problem that many couples confront (Jones and Cohen, 2001
), without, at the same time, participating in anything involved in rearing the offspring. As it has been suggested, the adults preference for anonymity indicates peoples fear of future expectations (Papaligoura and Papagounos, 1996
), the desire to avoid social outcry and criticism and the will to maintain the balance within family relationships (Benshushan and Schenker, 1998
). On the other hand the childs right to know his/her genetic origins is justified by the fact that the child might face potential risks created out of lack of crucial information, e.g. the risk of marriage between genetically linked children or the risk of genetic defects (Papaligoura, 1997
; Kalfoglou and Geller, 2000
; Sozos et al., 2000
).
These controversial matters regarding the donor and offsprings rights are not clarified by any law in Greece and cannot be included in any agreement between the donor and the social parents.
Another issue concerning human rights involves embryo reduction as an item included in the first indicator (Table III). In the present study, respondents intention to use GDS is positively associated with refusal of embryo reduction. In other words, respondents intention to have recourse to GDS is higher when embryo reduction is guaranteed not to occur. Moreover, in another related question the majority of the respondents opposed embryo reduction in the case of multiple gestations. Although these two findings may reflect peoples strong desire to have children, considering any loss as unacceptable, it also underlines the need for further information and sensitization to the fact that, taking into consideration the current development of technologies, embryo reduction constitutes the continuation of life and not the termination of pregnancy. It has been well established that multiple gestations are associated with increased rates of premature delivery, perinatal mortality and long-term morbidity. Moreover, embryo reduction constitutes a means of enhancing the welfare of the mother (Jones and Cohen, 2001
). Certainly, others pose a different view and support the rights of the pre-embryo. They believe that since the pre-embryo is a potential human being, it should be handled with dignity and its rights should be respected as long as they do not harm major social, maternal or other ethical interests (Eisenberg and Schenker, 1997
; Coleman and DeBuono, 2000
).
With regard to the second attitudinal factor (LFS), the results indicate a positive relationship between each one of the seven items that compose this factor and the intention to use GDS. That means that the more favourable the legislation regarding GDS and the more governmental support for the procedure, the greater their intention to have recourse to GDS.
In Greece there is neither legislation nor guidelines to clarify the relationship between the donor and the rearing parents, as well as the sharing of parental rights and obligations (Jones and Cohen, 2001). This lack of explicitness concerning the offspring could be a reason that deters people from participating in that procedure. Therefore it is essential for the public and especially for infertile couples to become aware of the documents and agreements that are conducted by the two parties involved in assisted reproduction in order to provide them with guaranteed results, as shown by international experience (Eisenberg and Schenker, 1998
). The reproductive centres and the lawyers associations should disseminate such public information until the enactment of an adequate law, with the aim of establishing a feeling of greater certainty among prospective ART users.
Additionally, the respondents intention to use GDS increases in relation to the increase of governmental financial support over GDS. In Greece, assisted reproduction constitutes an expensive procedure and it is partly covered by health insurance. However, ART is not the only form of medical treatment regularly excluded from health insurance policies. Many individuals with insurance also face significant gaps in coverage for preventive care, gynaecological care, dental care and other treatments. Moreover, many people have no health insurance at all. It is noted then that they could not make a strong claim that legislation giving special priority to assisted reproduction be passed when so many other basic health care needs remain unmet (Coleman and DeBuono, 2000). Even though savings on the NHS budgets may be a significant reason to limit the free availability of reproductive treatments, ethical concerns may be another equally important concern (Andersen and Loft, 1998
).
Taking into account the case of Greece (which has a low birthrate), governmental social policy should promote infertility treatment as a main solution to the problem of sub-fertility and accept the free availability of these treatments within the hospital system. Also, research on ART should be funded so that infertility treatment can gain a wider recognition among Greek people.
Furthermore, a slightly significant variable that was shown to have a negative association with the intention to use GDS is church attendance. That means that decreasing scores of church attendance are associated with higher intention to use GDS. Church-going people, who follow the principles that religion dictates, seem hostile to new technologies and particularly technologies in the area of reproduction. According to these principles their desire to obtain children is legal, honourable and dear to God, when it occurs within marriage, because reproduction constitutes one of the main aims of marriage. Even recourse to medical science in order to solve the reproductive problems does not stand against Gods will, but is imperative. However, the attempt to surmount natural order, by using the assistance of reproductive technologies, is not acceptable. For the same reason many distinguished representatives of Orthodox Ecclesia reject every form of assisted reproduction, considering it an adulterous act (Shenker, 2000). Greek Orthodox Ecclesia should encourage its laymen, and particularly the infertile couples, to attend the infertility centres and share their reproductive problems with the experts. Access to these centres could familiarize laymen with modern technologies and provide them with other forms of treatment, which would not be in contradiction to their convictions. Besides, a reproductive problem is not always connected with physiological factors.
In summary, social, legislative and financial implications provide a convenient rationale for adopting a favourable intention towards reproductive technologies. The results of this research are relevant in respect of policy discussions, especially to policies on human rights, legislation and finance of reproductive techniques. The main finding, that attitudinal indicators contribute to the intention to have recourse to GDS, provides a strong argument for the promotion of policies that would improve the circumstances in which men and women familiarize themselves with modern reproductive techniques, and increase their chances of solving infertility problems. Moreover, attention to the attitudinal factors toward GDS in Greece should be seen as part of a strategy for addressing inequalities in health. Such perceptions should motivate both the policy makers and health services for promoting public sensitization and establishing legislative and financial measures in order to increase accessibility to ART. The present research suggests that these recommendations should be given close consideration.
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Acknowledgements |
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Notes |
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References |
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Submitted on May 21, 2002; accepted on July 25, 2002.