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SPECIAL ARTICLE
a
AGC Pediatría, Hospital Universitario Central de Asturias (HUCA), IUOPA-Departamento de Medicina-ISPA, Universidadde
Oviedo, CIBERESP, Oviedo, Spain
b
Centro de Salud Villablanca, Madrid, Spain
c
Consejería de Salud del Principado de Asturias, Oviedo, Spain
KEYWORDS Abstract Spain is the European country where more assisted reproduction techniques (ART)
Assisted reproduction are performed, reaching 9% of newborns. The objective of this article is to introduce the legal
techniques; framework and to analyze some ethical questions, not without controversy, in relation to the
Anonymity; anonymity of gamete donors and the concealment of origin by ART from their children. Spanish
Gamete donors; legislation establishes the relative anonymity of donors: both gamete recipients and born chil-
Confidentiality; dren have the right to obtain general information about them as long as their identity is not
Registries; included, but in situations of risk to the life and health of the children allows your bankruptcy.
Bioethics; Likewise, an unequivocal right to privacy and confidentiality of submission to the TRA is estab-
Pediatrics lished. The movement aimed at introducing in our country a legislative amendment that ends
the anonymity of gamete donors is based on the right of those children to know their biologi-
cal origin. Along with legal changes, the attitude of parents and professionals must gradually
change towards more transparent and responsible communication, based on the experiences of
adults conceived by these techniques, and those adopted. Building values such as trust and truth
in the family relationships from responsibility requires placing the children, largely forgotten
and the most vulnerable part, at the center of the debate.
© 2021 Asociación Española de Pediatrı́a. Published by Elsevier España, S.L.U. This is an open
access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/
4.0/).
夽
Please cite this article as: Riaño-Galán, C. Martínez González, Gallego Riestra S, Cuestiones éticas y legales del anonimato y la confi-
dencialidad en la donación de gametos. An Pediatr (Barc). 2021;94:337.
∗ Corresponding author.
2341-2879/© 2021 Asociación Española de Pediatrı́a. Published by Elsevier España, S.L.U. This is an open access article under the CC BY-NC-ND
license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
I. Riaño-Galán, C. Martínez González and S. Gallego Riestra
‘‘It’s a girl!’’ With great anticipation, on July 25, 1978 the ity of ART contrasts with the secrecy that usually surrounds
world learned of the birth of Louise Brown, the first ‘‘test- these births). This is reflected by the fact that while hospi-
tube baby’’, possibly the most awaited birth in 2000 years tal discharge summaries may document the birth after ART,
according to Time magazine. In Spain, the first baby fruit of if it is mentioned at all, it is not infrequent for parents to
in vitro fertilization (IVF), Victoria Anna, was born on July request that this fact be excluded from the health record of
12, 1984, an event that also received considerable media the minor.5
coverage. All of this raises novel ethical dilemmas and countless
Since then, it is estimated that more than 9 million questions: Who decides which data should be included in
children1 have been born worldwide with the help of assisted the health record (HR) and based on which criteria? Can
reproductive technology (ART). It has been a veritable rev- patients decide which information to share or not share with
olution in human reproduction that was initially aimed to their doctors? Is it possible to request the removal or modi-
treat infertile couples and has since been applied to other fication of previously recorded information? If a potentially
situations (single women, same-sex couples). Political, eco- severe genetic disorder is diagnosed, should the donor or
nomic, ethical and legal aspects have resulted in substantial other potentially affected individuals born from the donor
differences in the application and development of ART,2 the gametes be notified? Does the child have a right to know
most important of which include factors like the accessi- their biological origin?
bility and cost of treatment, but also cultural aspects and The aim of this article is to introduce the legal framework
beliefs and personal and career choices that result in the of the anonymity of gamete donors and the concealment
postponement of childbearing. The large constellation of from the offspring of their history of birth after ART and
potential situations in Europe3 is complex in terms of the analyse some associated ethical aspects that may be contro-
law, regulations, approved techniques, indications, the age versial in order to guide prudent clinical decision-making.
windows for donors and recipients, the maximum number
of offspring per donor, public funding or the registries of
ART users and donors. These differences have given rise to
the phenomenon known as reproductive tourism in search of Contents on the right to anonymity in assisted
countries with less stringent laws. reproductive technology
Spain is the leading country in Europe and third in the
world in the number of performed ART treatments. In 2018, In Spain, the right to anonymity established in Law 14/2006
the 149 337 cycles of IVF and 34 100 artificial insemination regulating ART only refers to the right of the donor to not be
procedures resulted in 37 094 births. This fact, which cor- identified, but this law also guarantees the confidentiality
responds to a proportion of births after ART of more than of health care, and therefore 2 different issues need to be
9% of the total births,4 involves a paradox (the birth rate addressed: the right to privacy and confidentiality in under-
is decreasing but the number of children born after ART going ART procedures, and the anonymity of donors in the
increasing) as well as a certain incongruence (the popular- strict sense (Table 1).
337.e2
Anales de Pediatría 94 (2021) 337.e1---337.e6
Law 14/2006 on assisted reproductive technology The law on PA establishes that the HR will include any infor-
establishes that gamete donation will be anonymous and mation considered clinically relevant and that its ultimate
that gamete banks will guarantee the confidentiality of the purpose is to facilitate the delivery of health care by docu-
personally identifiable data of the donor, as will any menting any data that, in the judgment of the clinician, will
established donor registries and registries of the activity in provide an accurate and up-to-date picture of the health
associated facilities. At the same time, the same law condition of the patient. Thus, health care providers are
dictates that all the information must be documented in the individuals responsible for deciding which data should
individual health records guaranteeing confidentiality as be included in the HR and for how long based on the rele-
concerns the identity of the donor, the data and health vance of the information, and it would be difficult to find
information of the users and the circumstances surrounding arguments to support the notion that, at least during preg-
the origin of donor-conceived individuals. Therefore, it is nancy and delivery, information concerning conception after
necessary to distinguish two aspects of the right to privacy: ART is not relevant.
on one hand, privacy in relation to the process itself, that
is, to the fact that an individual is the recipient of gamete
donation and ART, and on the other, the anonymity Health care records of individuals born after
provided to gamete donors assisted reproductive technology in health care
facilities
337.e3
I. Riaño-Galán, C. Martínez González and S. Gallego Riestra
exceptions. Therefore, the debate about anonymity does rise to a complex and diverse spectrum of families, both in
not arise from arguments related to health, as current law visible and invisible ways. Families held together by emo-
contemplates breaking anonymity when necessary. tional bonds rather than genetic ones. A revolution that is
also an enrichment.
New tendencies toward the abolition of anonymity and
arguments in support of anonymity
Moving away from paternalism, the need to inform
The Spanish law on ART settled on donor anonymity, fol-
lowing the general trend in Europe years ago. However, the the offspring
prevailing tendency at present is to consider that the off-
spring have the right to know the identity of the donor, Social progress and change clash with the regressive ten-
upon reaching age 18 years, if they so desire.9 Neighbouring dency to conceal from offspring their conception using ART,
countries such as Norway (2003), the Netherlands (2004), made invisible by the absence of external factors that would
the United Kingdom (2005) and Finland (2006) repealed make them identifiable, which is similar to what occurred
the right to anonymity originally established; Austria, the with domestic adoptions in the past. However, leaving aside
Netherlands, Switzerland and Germany allow disclosure of the appropriateness of these methods, confusing privacy
the donor; Portugal (2018) considers anonymity unconstitu- with concealment impinges on values like transparency,
tional. United States law allows the donor to choose whether truth or the right to know one’s own origins and may actu-
or not to remain anonymous. ally mask a paternalistic attitude that runs counter to the
In Spain, this issue has been subject to substantial pursuit of patient autonomy.
debate, but nearly exclusively from a legal standpoint. Recently, in addition to changes in legislation, the atti-
Those who oppose anonymity argue that it infringes the con- tude of parents and health care professionals has been
stitutional principle of equality, as individuals born after shifting towards more transparent and responsible commu-
spontaneous conception have a right to research biological nication based on the experience of adults conceived using
paternity and maternity, an option that is denied to indi- ART and adult adoptees.15
viduals born after ART.10,11 One relevant consideration is Many studies have evaluated the appropriateness of par-
that Law 26/2015 amending the system for child and youth ents informing their children about their conception through
protection has repealed anonymity in adoption, stipulating the use of donated gametes. This disclosure, which may be
that adopted or foster care children have a right to know made at an early age (3---4 years), in adolescence or in adult-
their biological origin once they reach the age of majority hood, tends to be traumatic and difficult; many of these
or before that time through their legal guardians. As early individuals express that they wish they had been informed
as 1999, the Supreme Court12 had declared the regulation by their parents when they were children, would like to have
of the Civil Register that allow anonymous delivery uncon- information about the donor or even meet the donor and
stitutional on account of violating the dignity of the child their potential siblings, which brings up another important
and their right to know their maternal filiation. issue: the possibility of identifying the biological parent that
What will definitely affect legislation changes in Spain donated the gamete.
is the position adopted by the European Union, which has The main concern for some parents is that their child will
already been announced in the provisional version of Rec- develop an emotional bond with the donor, and the absence
ommendation 2156/2019.13 This Recommendation already of a genetic connection or the experience of childbearing
reflects the movement in support of recognising the right seems to make fathers more likely to maintain secrecy com-
of offspring to know their biological origins, seeks to repeal pared to mothers.16
anonymity in future gamete donations and forbids the use Despite these changing trends, it is worth noting that
of anonymously donated gametes, and establishes that the a high percentage of Finnish fathers (66.7%) and mothers
identity of the donor should be disclosed to the offspring (49.6%) reported that they had not disclosed the use of
once they reach the age of maturity while maintaining their ART to their health care providers and expressed upset that
right to not know. health care staff mentioned the subject in the presence of
the child.15
The need for honesty and the right of the child to know,
Ethical aspects in addition to the risk that the child discovers the truth by
accident, are the main reasons for disclosure. Chief among
The diversity in the origins of children is as old as humanity the arguments in support of concealment is that this infor-
itself. There have always been children that were adopted, mation may not be needed, followed by fear that it may hurt
given away, bought or fruit of known or agreed-on extra- the child.17
marital relations. In Spain, until a few years ago, domestic
adoption in the absence of divorce, blended families or
same-sex parents corresponded to an invisible minority Controversies regarding donor anonymity
within a social context that favoured secrecy.
The current situation is quite different, with an evident The Committee of Bioethics of Spain,18 in line with other
and visible change in recent decades in maternity, pater- European countries and focusing on the best interests of the
nity and the ways to start a family. These changes have child, has proposed a law reform to eliminate the current
been brought on by international adoption, same-sex and provision of anonymity in gamete donation in Spain, noting
single-parent parenthood and birth after ART with gamete that this change in legislation must be accompanied by a
donation, embryo adoption or surrogacy.14 All of these give true cultural shift in the field of assisted reproduction and
337.e4
Anales de Pediatría 94 (2021) 337.e1---337.e6
From the scientific and clinical standpoints, sharing the The authors have no conflicts of interest to declare.
information of ART registries and HRs of individuals born
after ART is essential.25 These records will allow evalua- References
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