On New Reproductive Technologies and Family Ethics: Preimplantation Genetic Diagnosis (PGD) for Sibling

Donor (SD) in Israel and Germany

Yael Hashiloni Dolev, The Academic College of Tel-Aviv Yaffo

Shiri Shkedi, The Hebrew University Jerusalem

Introduction: What is PGD?

• PGD is an early form of prenatal diagnosis (PND).• Couples opting for PGD undergo in vitro fertilization (IVF).• The pre-embryos are biopsied and genetically screened in vitro. • Only those which have the desired genetic profile are

transferred to the uterus, using standard IVF procedures.

• The technique is mainly used by couples in one or more of the following cases: 1. the presence of a high risk of having a child with a monogenic disease 2. recurrent miscarriages 3. religious or moral objections to selective abortion.

?What is PGD for SD

• Recently, PGD has also been used to test pre-embryos for tissue matching so that they can later serve as cord blood or bone marrow donors to an existing affected sibling.

• In most cases, SDs are themselves at risk for the condition to be treated in the existing child.

• In recessive transmitted genetic disorders (e.g: Fanconi Anemia, Thalassaemia) only 3 out of 16 pre-embryos would be both free of the disease and tissue matched, making the procedure's success rate relatively low.

3 main sets of ethical objections to PGD

• Protection of the very early embryo: While standard repro-genetics selects embryos for their own future health, PGD for SD involves discarding pre-embryos that are believed to be perfectly "healthy“, just because they do not match the needs of their sick sibling.

• Opposition to selection: Human reproduction should remain “natural”. Selection turns the child into a “manufactured good”. This argument is often linked to fears of “designed babies’, "playing God“ and “eugenics”

• Protection of the future rights of the unborn, its human dignity, and the “natural” relationships between the generations. This argumentation is linked to fears of an irreversible change in the relationship between children (the "produced") and their "producers" (the parents).

In favor of PGD

• Bioethicists in favor of PGD argue that since PND in general is widely accepted, there is no reason to single out PGD and ban it (Penning, Schots & Libaers, 2002).

• Another argument is that the failure to implant a pre-embryo is morally preferable to killing a more developed fetus (Robertson, 2003).

PGD for SD raises additional questions concerning family relations:

• What can families rightly expect of their future children?

• Are the family's present needs synonymous with those of the future child, or do they conflict?

• Should it be permissible to create a child not merely for her own sake but to save the life of another child?

• What unique emotions may the relationship between the future siblings involve ?

• Should the transplantation fail, would the donor child be loved anyway?

Structure of the lecture

In the following I will:

• Introduce the status of NRTs in Israel and Germany.

• Examine the specific regulatory and ethical discussions concerning PGD and PGD for SD within the studied societies.

• Discuss the different perceptions of family ethics reflected in these debates.

Methodology – Narrative analysis of different texts

While ethical debate in Germany regarding NRTs is intense, such a debate hardly exists in Israel. This imbalance is part of the phenomenon analyzed in this study, and the reason why our empirical data from Germany and Israel are dissimilar.

In Germany our analysis is mainly focused on two governmental reports attempting to generate regulations concerning PGD:

• The German Parliamentary Commission (GP) on Law and Ethics in Modern Medicine, established by the German Parliament (2002)

• The National Ethics Council (NEC) appointed to discuss genetic diagnosis before and during pregnancy, initiated by the German Chancellor (2003).

MethodologyIn Israel, due to the scarcity of official discussion concerning PGD, our

empirical materials are more diverse and include :

• Reports from parliamentary ethics committees

• Popular media coverage of the issue.

The ethical and public discourse in Israel are entwined with the personal story of the Harari family, who were the second family in the world to successfully use PGD for SD, in order to save their child, who was suffering from Fanconi Anemia.

Consequently, the mother, Sharon Harari became an advocate for PGD, who

played a part in shaping policy. We thus analyze the way Harari's story was covered in the popular media, and described in her autobiography.

Background on NRTs in Israel & Germany

Israel: The Jewish-Israeli society is particularly favorable to NRTs. This has been said to result from a complex matrix of factors:

• The importance of procreation in Jewish-Israeli culture

• Jewish-Zionist traditions and their exceptional trust in the blessings of science.

• The Israeli state's disregard for the alleged rights of fetuses. • Negative stereotypes of the disabled.

Any discussion of the dangers inherent in NRTs, either for the future mother, the future child, or for the morality of society are rarely raised in Israel.

NRT in Germany

Germany is known to have one of the most restrictive legislation in the area of NRTs

According to the Embryo Protection Act, the embryo is entitled to legal protection right from the start.

The German restrictive attitude has been offered different explanations:

• The trauma of the Nazi past , which results in a high level of sensitivity toward any "selection” or discriminating against the handicapped.

• Hegemonic philosophical styles of reasoning (mostly Kantian tradition). (Krones et al, 2006).

• Low birth rate, suggesting that having children is not viewed as a necessity for a “complete experience of life”

PGD Policy - Israel

In contrast to the German situation, where PGD in general and for SD in particular, raises ethical objections, in Israel it is understood as a non-debatable life saving procedure.

In Israel PGD is allowed for the same prerequisites as PND;

By couples at a high risk of having children affected by: monogenic diseases expressed in childhood, chromosomal aberration, or late onset diseases.

By couples undergoing IVF treatments in order to improve the treatment's efficiency

In rare cases, for non-medical sex selection.

PGD for SD, is allowed for parents of a child affected by a disease which can only be treated by transplanting cord blood or bone marrow from a tissue-matched first-relative donor.

PGD Policy - Germany

At the time this research was conducted, PGD was prohibited in Germany, as the very techniques involved in performing it were interpreted as contradicting the Embryo Protection Act.

New Regulations

PGD has become permissible as of July this year

It can now be carried out if the child will be born with a severe genetic disease, or if the embryo is so severely impaired that the pregnancy will result in a miscarriage or stillbirth.

PGD for SD is (still?) banned

The role of family ethics in the ethical, legal, and popular discussions regarding PGD for SD

in Israel and Germany

We argue that previous discussions of the regulation of NRTs in the studied societies have paid too little attention to the effects of family ethics.

SD are selected not simply because of their parents’ “egoistic desires”, but in order to “assist” other family members, and thus help to unpack the taken for granted assumptions regarding family relations underlying the ethical discussion under study.

We suggest that PGD in general, and PGD for SD in particular, have been restricted in Germany but endorsed without any hesitation in Israel, also due to a different family ethics prevalent in those societies.

How the ethical discussions regarding PGD in I&G view family matters, such as:

• Norms and concepts of "ideal parenthood“

• Understandings regarding autonomy versus mutual dependence between family members

• potential family conflicts and interests.

We will now follow these three major lines of argumentation separately. In reality, however, they are not so clearly divided, but are rather entangled and intertwined

Concepts of "ideal parenthood“-Israel

The way in which parents' love and care for their children finds its ideal expression is seen differently in Germany and Israel.

Remennick (2006) found that Jewish-Israeli women understand their role as 'good mothers' to include 'genetic responsibility' for future offspring and other family members.

Responsible mothers are thus expected to ensure the health of their future children, and to prevent suffering of both the disabled child and its parents, by relying on biotechnologies and performing the maximal number of diagnostic tests during pregnancy.

In this context, the use of PGD for SD is viewed as an expression of parents' love and responsibility toward their actual and potential offspring – healthy or not.

Concepts of "ideal parenthood“-Israel

Accordingly, the Israeli guidelines regarding PGD for SD say:

• "Parents who wish to save the life of one of their children are certainly parents who love all of their children, and one should not fear that they will have another child who will serve as a mere ‘means’" (ABC, p. 5, our translation).

Therefore, parents who use PGD in order to select a SD are considered to act in a loving and responsible manner, for the sake of all their children. In fact, their use of PGD in order to help their sick child is understood as a sign of their love and devotion to all their children, sick or healthy, "designed" or “natural”.

Concepts of "ideal parenthood” -Germany

In G. Parents are expected to accept and love their children unconditionally, and good motherhood is ideally seen as non-selective

G. women who choose to undertake PND are held responsible for not having the right

moral consciousness. They are often accused of being egoistic/hedonistic, since they supposedly pursue their own happiness while neglecting the rights of their future child (Hashiloni-Dolev, 2007).

Additionally, they are suspected of subjecting themselves to rigorous concepts of normalcy which distort their motherly love (Krones et al., 2006).

This ideal was clearly formulated in a famous speech on contemporary genetics by the former German President, Johannes Rau (2001), who used the metaphor of a gift to describe children, implying that they should be accepted "as is". Rau argued that there is no such thing as a right to healthy children, or to children at all. However, children do have a right to caring parents, and, above all, to be born and loved for their own sake.

Concepts of "ideal parenthood” -Germany

In a similar vein, the parliamentary committee appointed to discuss PGD regulation in Germany argued that:

"Such 'arguments of compassion' in favor of PGD approval are rejected with a view to the realization that all children and all human beings depend on being unconditionally accepted by their parents and by society as a whole" (GP, p.180).

Furthermore, PGD is imagined by its opponents in the National Ethics Council to seriously endanger the parent-child relationship:

"assisted reproduction coupled with PGD hampers the structuring of such a [parent-child] relationship … and potentially gives rise to permanent distancing from a child created this way" (NEC, p. 85).

It is also feared that PGD will lead children to distrust their parents’ love:

"[H]igh expectations on the part of the parents' vis-à-vis a child born after IVF/PGD could add a problematic twist to the parent-child relationship. The fact that the child knows that his or her acceptance by the parents was contingent on a certain genetic make-up burdens the relationship with the parents" (GP, P.180).

love

The assumption of the German opponents of PGD that parents who “select” their children are not loving enough, is based on the belief that parents who choose not to have disabled children do so not only because they fear the life-long commitment of taking care of the child, but also because they fear that they will not love her.

This is, of course, arguable, as parents may take such a decision because

they fear that they will love their children so much as to make their suffering especially painful.

Thus, it may be love, rather than the fear of its absence, that pushes for

selection.

Autonomy vs. the mutual dependence of family members-Germany

In G. argumentations that draw upon the Kantian maxim that human beings should be treated as an end in themselves, and never merely as a means are often echoed in discussions concerning the ideal relationship between generations, and the threats that NRTs pose to them.

The German governmental inquiry into gene therapy 20 years ago argued that:

“Parents have no right to treat children as products or to program them according to their wishes… It is not for parents to design their children and in this way limit their individual freedom. Doing so would be to violate their integrity. Thus, for parents to seek to design their children according to their own wishes would be to usurp undue power over future generations; it is not for earlier generations to become the masters over future generations or for the dead to rule over the living”

Likewise, in 2003, members of the German National Ethics Council wrote that:

" …It is an important achievement of modern civilization that the parent-child relationship has come to be interpreted as one of mutual respect. Vis-à-vis their parents, children assume the position of subjects, and therefore must not be seen as objects of parental reproductive decisions" (NEC, pp. 70-71).

Autonomy vs. mutual dependence of family members-Germany

The Kantian imperative and PGD:

Members of the National Ethics Council regarding PGD have expressed a fear that it will impede parents' acceptance of their future offspring as an individual who exists for her own sake. They write:

" By virtue of assisted reproduction for the purpose of PGD and as a result of the ensuing PGD itself, the future child inevitably becomes the object of decisions (determination of criteria, selection, or rejection) inconsistent with the acceptance of the child for his own sake" (NEC, p. 71, emphasis added).

Autonomy vs. mutual dependence of family members-Germany

Specifically concerning PGD for DS, and regarding the "designed" child's status as an individual subject they write:

"[T]he same applies to the worry that a child's notion of his own identity and self-esteem might later be adversely affected when he learns that he owes his existence to a process of selection ... the child subsequently comes to feel that he exists not for his own sake but only to serve as a donor of a particular tissue for a sick sibling" (NEC, p.85).

The opponents of PGD in Germany primarily view embryos as potential isolated subjects, independent of their embeddings in a family.

In consequence, they argue that future parents should never be allowed to design their children in order to satisfy their own needs or desires, as to do so would violate the future child's rights as a subject.

Autonomy vs. mutual dependence of family members-Israel

Alternatively, the Israeli discourse of reproductive genetics is based on the assumption that family members are mutually dependant, and thus none

of them is seen as truly autonomous.

In Israeli-Jewish culture, an embryo/fetus obtains its status through its relations with the members of the particular family it will be born into, and its moral standing is not separated from its mother-to-be, but is rather dependant on her physical and mental condition and the definition of the pregnancy situation (Hashiloni-Dolev, 2007).

Additionally, according to Berkowitz (1999) womanhood in Israel is understood as synonymous to motherhood, and women are not commonly related to as autonomous and fully independent individuals, either by the state or by themselves.

This notable bond between mother and child, which weakens the independent individuality (quite literally) of each of them, is illustrated in

Sharon Harari's story about her personal experience with PGD for SD:

"There is an unresolved question regarding the family's genealogical tree. Where do we end and where do they begin? Are there any clear boundaries in this continuum of parents and children? My margins were clear until I became a mother myself. … [at that point] the lines of the private body were blurred, and part of my inside was freed from my body. It had a figure, a name, and an identity of its own, but in fact, a complicated symbiotic connection had been created between us" (Harari, 2005, pp.132-133, our translation).

In an newspaper interview, Harari was asked whether she would tell her SD daughter, the story of her birth. Harari’s answer pointed to her view of the family as a unified group, whose members are obligated to help each other

without that endangering their personal/autonomous identity :

"We would tell her what we told Amitai [the affected son], that his bone marrow was ill, and since in a family you do whatever you have to for one another, we made a cooperative effort to save him by finding the best bone marrow … and found that it exists in the cord blood, the combined blood of her mother and father … and we are all connected in a blood tie" (Negev, 2005,our translation).

Appointed to discuss PGD, the Israeli parliament’s Science and Technology Committee invited Sharon Harari to tell her story. Opening this session, the chairman of the committee introduced Harari as

follows :

"[A]t today's meeting we shall discuss another purpose of PGD, one which I think is undisputable – saving life. There can be debate when things are not clear, but when it comes to saving life, there is no argument. For this reason, we have invited Sharon Harari …, who in an innovative procedure of IVF and embryo selection gave birth to a baby girl for the sake of donating bone-marrow to her sick brother" (Israeli parliament, 2005, our translation).

Harari’s imageAs we can see, in this meeting, like in other cases, Harari's personal

story was used to affect policy.

In this event, like in many others, Harari was not confronted with any questions regarding the ethical implications of her experience. Rather, she was treated as a courageous mother and a role model for the beneficial, non-debatable use of biotechnologies in order to save life.

Equally, Israeli press coverage of the Harari story stressed the procedure's advantages and the medical breakthrough, while representing Harari as a heroic and ethical mother who had done everything possible to save her child. Little or no attention was paid to the possible harm either to the mother or to the future child.

Official Israeli stance concerning PGD for SD

It is interesting to note that the Israeli guidelines emphasize the Kantian imperative like in the German ethical discussion. However, this very same principle is interpreted differently in the two societies.

While the opponents of PGD in G. argue that it necessarily violates the future child's status as a subject, in I. SDs are not considered as either a means or an end. Rather they can supposedly be both, as “instrumentalizing” and loving a child on its own merits are not seen to be contradictory.

The Israeli guidelines demand a psychological evaluation of parents who wish to use PGD for SD in order to ensure that the future child is wanted for her own sake. Having established that, the guidelines state that there is "no moral fault in choosing a healthy child, who is simultaneously a potential donor" (ABC, p.4).

Potential family conflicts and interests - Germany

Relating to the demands for parents' unconditional love and for treating children as ends in themselves, we argue that the dominant German ethical discourse regarding reproductive medicine is based on the assumption that the interests of future children potentially conflict with those of their other family members.

The opponents of PGD in the German National Ethics Council do not primarily think of the family in terms of a unified body with a common good, but rather in terms of different individual parties with competing interests.

Thus, they underestimate the parent's abilities to make decisions which are in their children's best interests, and argue that the child's status as a subject may even be violated by their parents’ good intentions.

Potential family conflicts and interests - Germany

The need to protect children from the possible exploitive tendencies of their parents is repeatedly stressed in the discussion concerning PGD for SD.

Ex: opponents in the parliamentary committee view PGD for SD as an example of "obvious exploitation of children for a particular purpose" (GP, p.186).

Concerns of possible exploitation by family members do not focus only on the future

child, but also on the mother:

"…to produce a genetically compatible stem cell donor for a child affected by a hereditary blood condition, women must, given the availability of PGD, wrestle with the question of whether they wish to become pregnant for this purpose. In such a case, a woman is subject to intense pressure of expectation, which it is difficult for her to escape" (NEC, p.84; emphasis added).

Likewise, when asked for their opinion regarding PGD, all women’s organizations in Germany objected to it (NEC, p.84).

Potential family conflicts and interests - Israel

The ethical discussion concerning NRTs in Israel is more limited in its protection of the future rights of children.

Concerning mothers, it strongly protects their right for parenthood, but does not protect them against pressures to become a mother or to sacrifice their bodies for the sake of motherhood.

We argue that this is a result of the conviction that a family is a unified body, with mutual rather than conflicting interests, where members can be both means and ends simultaneously.

Potential family conflicts and interests - Israel

PGD for SD is described in the Israeli ABC's guidelines as beneficial to all family members.

Regarding the mother, they write that she "benefits since she avoids the mental distress of a dying child".

Concerning the future child it is argued that she "has an interest in being born to a family without a sick brother/sister, or parent".

Obviously, the existing child also benefits, as her life is saved.

Thus PGD for SD is not only seen as morally unacceptable, but rather it is considered as "a double blessing, for it brings and saves life simultaneously" (p.5).

Conclusion

This article portrayed the differences in the regulatory and ethical discussions of PGD for SD in Germany and Israel.

Its major finding is that divergent perceptions of family ethics lead to the dissimilar status of PGD and PGD for SD in the two societies:

Fervent support in Israel, as opposed to suspicious prohibition in Germany.

We argued that an important , and so far neglected factor explaining the dramatic difference between Israeli and German policy regarding NRTs, is the philosophical and cultural understandings of the ideal relationships between family members.

Conclusion Family ties in both societies are certainly highly valued, and much thought

is given to the appropriate relationships between parents and children. Nonetheless, a dissimilar family ethics characterizes these societies.

This study's findings suggest that the arguments used by the opponents of PGD in Germany are built on a threefold view of family relationships:

1. An idealistic view, which demands unconditional love and acceptance between family members (even before birth);

2. A view of family members as first and foremost individuals holding autonomous rights, and not as members of a unified body with similar interests;

3. A view of the family as a potentially highly exploitive social group.

ConclusionConsequently, it is argued in Germany that because family relationships are

so complex and have the potential for both endless love and extreme exploitation, reproduction is better left to the rule of nature.

On the other hand, in Israel it is considered far more legitimate for parents to "design" or “select” their children as an expression of their parental love, caring, and responsibility toward the future child and its family.

This view goes together with thinking of children not only as individual subjects, but rather as members of a unified body, consisting of different members whose interests are imagined to be in concert.

Consequently, PGD for SD is viewed in Israel as a blessing which serves all

family members, rather than as a medical procedure creating family conflicts.

Thank you