JBRA Assist. Reprod. 2015;19 (4):252-258
UPDATE ARTICLE
doi: 10.5935/1518-0557.20150048
¹Law School, University of Macau, Macau, China
²Law School, Coimbra University, Coimbra, Portugal
CONFLICT OF INTERESTS
No conflict of interest have been declared.
ABSTRACT
Regulations recently passed in the UK to allow mitochondrial donation
through artificial reproductive techniques have heated up the debate
about this procedure, which in the near future may be extended to other
parts of the world. Detractors of mitochondrial donation invoke the
excessive risks inherent to the very novelty of the procedure and the
lack of knowledge of its consequences. In the ethical and legal
context, the main concerns relate to motherhood determination, the
notion of social individuality, its association with genetic
manipulation and all the issues accompanying it, the risk of opening
the door to more dangerous practices, the potential discrimination
toward existing individuals suffering with mitochondrial diseases, the
fact that the same outcome – preventing the transmission of
mitochondrial diseases – can be achieved by means of less risky
procedures, and the modification of the genetic pool of humanity.
However, most of the underlined risks are more uncertain than actual,
and, indeed, natural to every new technique. Considering the major
benefits offered by the procedure, and as long as we act under the
auspices of the principles of precaution and prevention, there are no
obstacles to the transference of mitochondrial material through
artificial reproductive techniques.
Keywords: Mitochondrial donation, Mitochondrial DNA, Parenthood, Identity, Genetic manipulation, Artificial reproductive techniques
The notion of mitochondrial donation
Recently, the UK became involved in a heated discussion around the
so-called “mitochondrial donation” or “mitochondrial transference”
procedures. The discussion has gone international, and regulatory
agencies in other countries such as the Food and Drug Administration in
the United States have been looking into the matter. But what is
mitochondrial donation and what is it for? Mitochondria can be found in
the cytoplasm (the material surrounding the nucleus of the cells and
that directly affects reproductive function) of almost any human cell,
in numbers ranging from several tens to thousands. They possess their
own genetic material, but they play no role, according to scientific
consensus, in the determination of one’s characteristics (Wellcome Trust, 2014),
but rather in the generation of most of the energy supplied to the
cell. Mutations in mitochondrial genes may have serious effects and
impair the production of energy to cells and tissues, giving rise to
neurodegenerative diseases, stroke-like episodes, blindness, muscular
dystrophy, diabetes, deafness, and cause the death of newborns,
children, and young adults. In other words, the human body needs
healthy mitochondria to fend off a wide range of mild, extremely
debilitating, and even deadly conditions. Transmitted exclusively by
the maternal route, it is estimated that one in 6,500 children will
develop a severe mitochondrial disorder (Wellcome Trust, 2014), for which there is no cure and whose symptoms cannot be successfully managed (Barber & Border, 2015; HFEA, 2014).
Mitochondrial DNA opposes to nuclear DNA, which amounts to 99.9% of the
total cell DNA and carries the vast majority of our genes, shapes our
physical characteristics (including appearance), and contributes to our
personality (along with education and environment). Unlike
mitochondrial DNA, these genes are inherited from both genetic parents.
Mitochondrial donation is a procedure carried out through assisted
reproductive techniques designed to prevent the birth of people with
inherited mitochondrial diseases. It precludes the transmission of
these diseases through the transfer of the cytoplasm of a “normal”
oocyte into another oocyte that does not meet the requirements
necessary for the birth of a healthy baby. It is performed via various
procedures, the most developed of which being maternal spindle transfer
(MST) and pro-nuclear transfer (PNT). Mitochondrial donation is carried
out through a modified version of in vitro fertilization, an assisted
reproductive technique (ART). The nuclear DNA of the patient – the
female element of the couple and future biological and legal mother –
is transferred to the enucleated oocyte of a donor (not considered the
biological mother) equipped with healthy mitochondria. In MST, the
nuclear DNA is removed from the donor egg, leaving the part of the cell
containing the healthy mitochondria. The nuclear DNA from the patient’s
egg is then inserted into this cell. The oocyte resulting from the
fusion of genetic materials is then fertilized with the sperm of the
male partner, who is both the genetic and legal father. Differently, in
PNT the patient’s egg is first fertilized and only then its
mitochondria are substituted with the healthy donor’s mitochondria.
Both procedures generate a child whose genetic heritage matches almost
100% that of their parents, with the exception of the mitochondrial
genes. Strictly speaking, the new being will be formed from the genetic
contributions of three persons: the two members of the couple and the
donor. Thus, the embryo will inherit 23 chromosomes from the father, 23
chromosomes from the mother, and the mitochondrial chromosomes of the
donor’s mitochondria. The only way to overcome this triple contribution
is by inviting a female donor maternally related to the patient.
However, in addition to possible problems of anonymity, this hypothesis
raises questions over the effectiveness of such procedure. In fact,
since the purpose of mitochondrial replacement is to prevent the
vertical transmission of diseases caused by mutations in mitochondrial
DNA, it is very likely that a female donor related to the patient will
convey the same mutations to the child. This discussion is far from
new. In the UK the focus of this controversy dates back to at least
2010, when the licensing of mitochondrial donation was first proposed.
In the years of 2011, 2013, and 2014, at the request of the British
Government, the Human Fertilization & Embryology Authority (HFEA)
carried out three scientific reviews on this technique and found no
evidence suggesting it was unsafe for clinical use. The matter was also
brought to public discussion (HFEA, 2013),
and public support was quite evident. Finally, regulations authorizing
the procedure in the UK went into effect in February 2015, sparking
intense discussions around the world.
When is the procedure useful?
Mitochondrial donation can occur for reasons other than preventing the
transmission of cytoplasmic diseases. It is particularly useful when a
female homosexual couple wishes to have a child that shares the genetic
material of both women. Though it is necessary (at least in the present
state of technique) to resort to sperm donation, it is possible
(scientifically possible, legal admissibility varies depending on the
legal system) to produce a child that combines the DNA of both women.
In order for both women to be genetically connected to the child, the
oocyte nucleus of one and the oocyte cytoplasm of the other have to be
used in the process. Another alternative application of this technique
is in the rejuvenation of oocytes belonging to women considered
reproductively old, since they would have trouble conceiving using
their own oocytes due to the increased count of mutant mitochondria
resulting from their age. However, in this review we will not refer to
these situations. Although they use the same techniques and raise many
of the same concerns, they have a distinct social contextualization
and, for that reason, a different legal framework. Therefore, we will
only cover mitochondrial donation designed to prevent the transmission
of inherited diseases of a mitochondrial nature (note that the inverse
technique can also be used by women with a healthy cytoplasm and
diseased nuclear DNA; if they wish to have a child genetically linked
to them, albeit minimally, they may resort to nuclear oocyte donation).
A legitimate procedure?
Criticism
to the admissibility of mitochondrial donation essentially underlines
the risks of the procedure from the medical, ethical, and legal
perspectives. However, most of the points raised by critics are hardly
realistic, and barely carry the relevance or yield the consequences
listed by them, as we shall demonstrate.
Medical risks
Medical risks
basically include the dangers inherent to procedures not yet fully
consolidated. It is a fact that scientists still do not master all the
consequences of this “mitochondrial meddling” in the life of the embryo
and its progeny (Knoepfler, 2014; Nuffield Council on Bioethics, 2012; Taylor, 2015),
and that some scientist have invoked precedents suggesting that
negative results are reasonably likely, without precisely identifying
their causes (Dong et al., 2006).
In the last century some fertility clinics in the US (Kolata, 2001) and China (Pearson, 2003),
among other countries, carried out procedures of human reproduction
similar to mitochondrial transfer and detected potential anomalies. For
this reason, the detractors of the procedure claim that although
today’s mitochondrial transfer technology has been relatively improved,
there is no clear evidence indicating that the potential losses will be
entirely avoided with the use of new technology. Perhaps it was the
awareness of these risks that led the HFEA to recommend that the
daughters of women (given that mitochondrial DNA is transmitted only
maternally) born by this procedure should undergo preimplantation
genetic diagnosis (PGD) to select their embryos, in order to ensure
that those embryos did not carry mitochondrial mutations and prevent
the occurrence of adverse side effects in future generations (HFEA, 2013).
A possible cautionary measure to this end would be to select only male
embryos, since the donated mitochondrial DNA would be passed on solely
to female babies. Regarding the male infants resulting from this
technique, though they are also carriers of the mitochondrial DNA, they
cannot pass it on to their offspring, once it is transmitted only by
the maternal route. It is a fact that this procedure would translate
into gender selection, a very controversial practice itself. However,
in this case the selection would derive from therapeutic motivations,
and would be admissible in most legal orders, according to article 14
of the European Convention on Human Rights and Biomedicine (Paolo et al., 2014; Raposo, 2014).
Another possible risk relates to eventual genetic incompatibilities.
Problems may arise because the patient and the donor may have different
mitochondrial haplotypes and, for this reason, there is a theoretical
risk that the donated mitochondria might fail to properly communicate
with the nuclear DNA of the patient, therefore causing problems in the
embryo and the resulting child (HFEA, 2014).
An additional risk comes from the fact that a small amount of “sick”
mitochondrial DNA from the patient might be transferred together with
nuclear DNA to the embryo, thus jeopardizing the entire process.
However, in such event the amount of diseased mitochondrial DNA
transferred would be so minuscule that it would be very unlikely for
the infant to be affected at all (HFEA, 2014).
In sum, various risks may be thought of. The fact is that it is
impossible to assure the absolute safety of any medical procedure. What
we can conclude after the investigation – and no other reproductive
technique was ever subject to such level of scrutiny – is that
scientific evidence suggests that the risks of mitochondrial donation
are proportionate to the severity of mitochondrial diseases (Wellcome Trust, 2014).
Non-medical risks
A few other perils should be considered in addition to medical risks,
this time of a more ethical and legal nature. Let us start with the
issue of parenting. In fact, it has been pointed out how difficult it
is to determine how many mothers the child will have: one or two?
Genetic bond is what traditionally determines motherhood – and
fatherhood. This basic principle grounds the legal solution in place on
the majority of legal orders, according to which juridical maternity is
determined by delivery, on the assumption (later on denied by
surrogacy) that the woman who gives birth – and only she – is the one
who maintains a genetic bond with the child. Apart from the scenarios
of gamete donation and gestational surrogacy, genetic ties are still
prevalent in juridical motherhood. In addition, the rule is that each
child has necessarily one father and one mother and, on the other hand,
solely one father and one mother. To a large extent these are still the
prevailing rules in most of the legal systems around the world (Bender, 2003; Raposo, 2007).
Nonetheless, these rules suffer exceptions in some jurisdictions. In
the UK the Human Fertilization and Embryology Act came to allow that
children conceived after April 6, 2009 may have two female parents,
appearing both women as mothers on the birth certificate and both
designated as “parents,” without reference to the legal father (Gamble, 2008/2009; McCandless & Sheldon, 2010). Other jurisdictions hypothesize three parents (tri-parenthood), as is the case of New Zealand (New Zealand Law Commission, 2005),
where a proposal was presented to legally recognize a child born by
artificial insemination as having three parents, including the donor.
In Canada, in the case AA v BB & CC (2007) ONCA 2, a Court of
Appeals in Ontario issued a declaration of motherhood in favor of a
lesbian woman, considered as the third parent of her partner’s
biological daughter (Radbord, 2010). Despite the
relevance of genetic ties, the modern legal rules on filiation give
more prevalence to the emotional and social bonds than to the
biological one, as demonstrated by the legal regimes on gamete donation
and surrogacy (when admitted), which clearly underline the desire to
raise and love the child. Nevertheless, even when reasoning in the
exclusive context of genetic contribution, the fact is that the input
of the mitochondrial donor is negligible in the overall picture of the
genetic code of the person so born. While each gamete donor (sperm and
oocytes) is responsible for 50% of the nuclear genetic makeup of the
child, mitochondrial donation contributes with a negligible amount of
DNA. Although a minimum threshold of genetic contribution required to
establish parentage has not been fixed – because the phenomenon of
having several contributions at the gametic level is quite new –
certainly a genetic contribution that low, furthermore devoid of the
intention to establish filiation ties, cannot sustain the maternity
bond (Nuffield Council On Bioethics, 2012).
In sum, despite the donor’s intervention, it is not accurate to state
that the child has three genetic parents. The contribution of the
mitochondrial donor is much closer to the one of an organ donor than to
a supposed genetic third parent. Indeed, the child will inherit between
20000-30000 genes from paternal sperm and maternal oocytes, whereas
mitochondrial donation transmits only 37 genes (next to a small
mitochondrial contribution from the maternal oocyte). Therefore, the
nomenclature “three-parent children” is misleading. Connected with this
issue is the question of the possible disturbance on the identity of
the person so born caused by the mix of genetic material (Baylis, 2011, 2013; Bredenoord et al., 2011). However, mitochondrial contribution is not enough to shape a person’s identity (HFEA, 2010b). Quoting the British Department of Health (2014),
“[w]e do not believe the transfer of mtDNA raises issues around
identity, since it does not carry any genetic data associated with the
normally accepted characteristics of identity. An analogy could be
drawn with replacing the battery in a camera – the brand of the battery
does not affect the functioning of the camera”. To understand otherwise
equals to be trapped into genetic reductionisms, which downgrade the
person to his/her genetic makeup. Excessive geneticism has been
inflamed in recent decades by virtue of some scientific advances,
particularly with regard to the use of DNA for forensic purposes of
research and identification, the renewed importance given to DNA
testing for paternity determination, the genetic study of populations,
and the consolidation of the Human Genome Project. However, this state
of affairs is being opposed by a growing tendency, particularly in the
field of criminology and psychology, which claims that the individual
is more the product of the environment and less the product of genes.
In parallel, in the legal world affiliation rules got away of purely
genetic kinship in favor of a so-called social or emotional
affiliation, essentially based on the desire to be a parent (Raposo, 2014; Wagner, 1995).
Even in the framework of pure genetic reasoning, the contribution of
mitochondrial DNA is infinitesimal, since “it represents less than
0.054% of the total DNA, and is not part of the nuclear DNA that
influences personality and other characteristics” (Anonymous, 2015).
Though the health status of a person, here dictated by mitochondrial
DNA, conditions his/her personal identity, the fact is that the same
can be said of the environment, education, and food, all of which
factors that affect our health. In all cases we have elements,
biological or not, that shape a person, to some extent turning him/her
into a different individual that would otherwise exist. Mitochondrial
DNA has not the power to shape the individuality of the new being as
nuclear DNA does; it simply plays the role of a conditioning element.
Another argument that cannot prevail is the fear of losing the “social
self” (Nuffield Council on Bioethics, 2012)
due to the possible existence of two mothers. After all, today the
community clearly perceives the role of the genetic material provided
by donors, especially when the genetic contribution is revealed so
faint as this one. This is the reason why laws do not recognize donor
as parents or relatives. Another relevant concern relates to the
eventual classification of mitochondrial donation as human genetic
modification, therefore subject to the limitations and prohibitions
imposed by rules governing genetic manipulation. Indeed, some authors
sustain that this is a form of germline genetic intervention, taking
into account the modifications that it operates in the genetic heritage
of the person and the effects it produces in his/her identity. Says
Bredenoord: “Modification of the mtDNA is not substantively different
from modification of the nuclear DNA in terms of its effects on the
identity of the future person (…) the moral acceptability of germ-line
modification does not depend on whether it alters the identity of the
future child – all germ-line modifications do – but on whether it
safeguards the child’s right to an open future” (Bredenoord et al., 2011).
These authors invoke the figure of the tailor-made child, stress the
perils of “playing God,” and underline the (although contested) right
to the unmodifiability of the genetic code (Knoepfler, 2014).
In contrast, other authors depart from the scope of genetic engineering
to sustain that it only qualifies as such when the intervention takes
place in the cell nucleus. According to the North East England Stem Cell Institute (2008),
“germline gene therapy is a term used for modifying genes in the
nuclear genome at the beginning of development with the intention of
changing the organism in a specific way and for potentially
transmitting this change to subsequent progeny. Due to the complexity
of the nuclear genome, there are risks associated with modifying it,
thus only gene therapy that avoids the germline is currently permitted.
Replacing diseased mitochondria with healthy ones is an inherently less
complicated procedure. No genome is being modified”. In fact, DNA is
not modified during mitochondrial transfer, but simply transferred from
a cell to another, which is not an exceptional step, since new
combinations of DNA, mitochondrial and nuclear, take place in nature
all over the reproductive process. Nevertheless, even if mitochondrial
transfer ends up being qualified as genetic manipulation, it must be
stated that this practice is not necessarily repudiable. In fact, it is
possible to sustain the legality of genetic interventions which merge
into therapeutic purposes, i.e., aimed to prevent the transmission of
diseases, hereditary or not (Raposo, 2014).
Actually, we can go further and defend that therapeutic genetic
intervention should not only be allowed, but instead, encouraged. It
can be argued that, strictly speaking, this intervention has no
therapeutic character, given that preventing the birth of a person with
a certain disease is different from curing that disease (Taylor, 2015).
But such criticism is grounded on a limited understanding of the
“therapeutic” aim and fails to take into account that in its current
application in medical techniques the concept “therapeutic” encompasses
every procedure related to health conditions, either to cure or prevent
the occurrence of a disease. But a caution note should be considered:
mitochondrial transfer should only apply when aimed at eliminating
pathological genetic notes, and not mere anomalous or unusual traits.
Here lies the main issue, since it is not always easy to distinguish
between both situations, i.e., to differentiate therapeutic
interventions from the ones intended for human improvement. At first
sight the answer seems (almost too) simple: in therapeutic
interventions the goal is to treat or prevent the transmission of
certain diseases or disabilities, whereas improvement intends to
produce an human being above the regular human standard. The problem
lies in the exact distinction between a disease/disability and a mere
particularity (Juengst, 1998; Parens, 1998; Raposo, 2014).
Though legal theory can certainly contribute to this discussion, the
distinction will be predominantly grounded on medical criteria. Another
related concern is based on the so-called slippery slope argument (Feito Grande, 1999),
according to which the admissibility of mitochondrial transfer opens
the door to any kind of genetic manipulation and even reproductive
cloning. However, this argument fails when applied in the context of
technological development. Ultimately, any scientific development would
be banned if this argument were accepted, since there is always the
possibility of opening the door to future developments. Some confound
mitochondrial transfer and cloning procedures. It is a fact that the
technology used in both is very similar. But cloning involves the
reprogramming of a cell, necessary for an adult cell to reverse to the
state of embryonic cell, a step omitted in mitochondrial transfer since
the oocyte enriched with the donated cytoplasm undergoes a regular
fertilization process. In addition, the new being created by
cytoplasmic transfer will have a unique and unrepeatable genetic code,
reflecting the paternal and maternal genetic contributions, while
conversely the cloned being will repeat an existing genetic code. But
the crucial difference relates to the purposes of both procedures:
mitochondrial transfer aims to prevent the birth of human being with
mitochondrial diseases, while reproductive cloning promotes the
creation of genetically identical individuals. Mitochondrial donation
has also been criticized for jeopardizing the welfare of existing
people suffering from mitochondrial diseases. This argument has been
used whenever technology (whether prenatal diagnosis or genetic
manipulation, or even more classical procedures) allows the birth of
human beings without diseases that otherwise would torment them (Raposo, 2014).
But does that mean that vaccines against tuberculosis or rubella
represented a lack of interest, or even a discriminatory attitude,
toward people suffering from these diseases? If tomorrow Science finds
a way to provide genetic protection against cancer to newborns, should
we refuse such technique arguing that it turns unworthy the life of
those who today suffer from various types of carcinomas (Harris, 2000, 2002)?
Taken to the extreme, no one would be cured of their diseases, because
treatment would be seen as a loss of interest in those who cannot be
cured. The prevention of diseases cannot be confused with contempt for
patients who suffer from such diseases. There is no reason to keep the
birth of sick or disabled children when those conditions could have
been prevented, unless we fall into the “equality of envy” (Ascensão, 2003),
according to which, in order to keep all equal, all should be kept
suffering. It can be argued that this procedure is not absolutely
necessary, to the extent that the same effect – birth of a child who is
not a carrier of a mitochondrial disease – is achievable by other less
risky means, such as PGD, gamete donation, embryo donation, or adoption
(Baylis, 2013; Taylor, 2015).
But in reality the effect is not necessarily the same. First, it should
be noted that PGD only works with existing genetic material; therefore,
the mitochondrial DNA of the reproductive technique users would be
transmitted to all embryos, preventing the selection of a healthy
embryo. In gamete donation – oocyte donation in our case – the born
child would have no genetic link with the female element of the couple,
which could be a major obstacle for some women (therefore, the argument
advocated against this procedure, that it would increase the need for
oocyte donation, thus increasing the level of danger for donors, cannot
prevail - Nuffield Council on Bioethics, 2012; Baylis, 2013).
The exact same impediment arises in embryo donation and in adoption, as
both procedures cannot guarantee the aspired genetic link. This raises
the question of whether the concept of reproductive responsibility – as
an obligation to prevent diseases and malformations to the offspring
that may be prevented in the current state of Science – allows the
imposition of limitations to reproductive rights (Raposo, 2014).
In other words, what is the price to pay to have a child that is
“genetically yours”? The starting point of this analysis is the
following: no one has an absolute right to having a biologically
related child, regardless of requirement and limitation. The right to
reproduction shall always be evaluated in conjunction with the
protection of unborn human beings and the rights of born human beings.
However, there is undoubtedly a natural human aspiration of having
biological offspring, which is a fourth generation fundamental right (Raposo, 2012).
Therefore, people cannot be forced to abdicate the right of having a
genetic child – thus depriving themselves of a fundamental right –
solely on behalf of hypothetical and uncertain risks, whose
demonstration is far from evident. Another concern relates to an
unlawful modification in human nature, as the genetic code of this new
being is transmitted to future generations to become part of the
genetic pool of humanity. While somatic genetic interventions (which
affect only the individual) have enjoyed some tolerance, the same is
not true for germinal genetic interventions (which are transmitted to
future generations). Changing the gene pool via human effort has
aroused criticism. However, is genetic heritage immutable (Bredenoord et al., 2011; Raposo, 2014)?
Is Science not allowed to modify the genome designed by nature, no
matter how aberrant its consequences are for the person and his/her
offspring? The random recombination of the forces of the universe is
imperatively more legitimate than genetic intervention? The human
genome cannot be sanctified. Law cannot hide behind a supposed genetic
immutability to prevent scientific advances whose purpose is to improve
our quality of life (Ascensão, 2003; Raposo, 2014).
The right to inherit an unchanged genetic code cannot override the
right to inherit a healthy gene pool, as follows from the right to
health and the right to physical integrity. Moreover, the mitochondrial
contribution will be diluted over subsequent generations, even more so
because transmission occurs solely via the maternal route. It must also
be stressed that this is a very small genetic change within the vast
human genetic code, in which the mitochondrial genome plays a
distinctively minor role. Our conclusion is not based on the amount of
genes involved, as the relevance of the change does not relate to the
quantity but rather to the functions associated with those genes. In
fact, it may be that an intervention in a small number of genes might
produce decisive changes for an individual, as is the case with changes
to the Y chromosome, which contains only 86 genes, but defines the
person’s gender (Nuffield Council On Bioethics, 2012).
However, while mitochondrial DNA interacts in different ways with
nuclear DNA, its contribution to the human genetic code is negligible
and unable to dictate any of our characteristics, but to improve our
health.
A legitimate practice?
Despite
the possible risks of mitochondrial donation, it must be stressed that
we are talking about purely hypothetical risks. In short, many of these
fears are grounded on risks that will probably never materialize. The
risks involved are not, after all, that different from the risks
inherent to any new technology or even to human reproduction. The mere
fact of having a child, be it through sexual intercourse or with the
aid of “technical interference”, is always a risky procedure, and one
can never know in advance (at least before the first prenatal tests)
whether the child will be healthy, much less if he/she will remain
healthy (or relatively healthy, at least) during his/her entire life.
So, strictly speaking, the question is not whether this procedure is
risk-free – a goal virtually impossible to achieve – but rather if the
magnitude of such risks and their probability of occurrence may be
justified by the expected benefits. Not even the experimental nature of
a procedure should be an argument strong enough enough to outlaw it.
Every consolidated technique begins with an experimental procedure and
will remain as such if not implemented. Therefore, the solution is not
to prohibit it, but to put into effect the principles of prevention and
precaution (Ballesteros, 2007; Romeo Casabona, 2003),
to thus introduce the required precautions and foster further
investments in research. Furthermore, we must have in mind the utmost
importance of the pursued aim, intrinsically linked to the principle of
medical and scientific beneficence, or more properly to an idea of
procreative beneficence, since the goal is to avoid the birth of
children with severe and potentially fatal diseases (Gorman et al., 2015), with no plausible risk to the child (Anonymous, 2015).
Doing nothing and allowing the birth of children so significantly
impaired would be a violation of medical rules and legal basic
principles.
Analogies between the regulation of oocyte donation and mitochondrial donation
Once mitochondrial donation is admitted it will require its own
regulations. Although such rules may seek inspiration in the legal
regime of gamete donation for reproduction purposes (note that the
rights and responsibilities of these donors differ from those who
donate gametes for research), they cannot be absolutely identical;
instead, they must take into account the specificities of each
procedure. In terms of similarities, the first point to be noted is the
removal of legal maternity from the donor, since the norm around the
world is that legal parenthood never lies with the donor (Raposo, 2014).
A solution that we can discuss is the anonymity/non- anonymity duality
and the analysis of whether the principles applicable to oocyte donors
translate well to mitochondrial donors. Europe is divided between
anonymity and non-anonymity, the former still leading legal preferences
despite growing controversy. In jurisdictions in which the person so
born is allowed access to the identity of the donor, as in the UK (by
means of the Human Fertilization & Embryology Authority, Disclosure
of Donor Insemination Regulations, 2004, S.I. 2004/1511), should this
solution also apply to mitochondrial donations and should the person so
born be able to contact the donor and other children who share the same
mitochondrial donation (HFEA, 2010a)?
The point is that the reasons that drive someone to find the identity
of an oocyte donor – namely the wish to satisfy the rights to genetic
and personal identity – are hardly valid within the context of
mitochondria donors, whose involvement contributes nothing to one’s
physical and psychological characteristics (Wellcome Trust, 2014).
Mitochondria do not define who we are as persons; therefore, it is more
difficult to sustain that knowing the donor’s identity might complete
the knowledge about one’s self. The very motivation of those who use
each one of these procedures – oocyte donation and mitochondria
donation – may dictate differences in the regulatory system of
anonymity. The reason is that mitochondrial donation will be used
precisely for those who want to ensure a genetic link with the
offspring, an aspiration absent in oocyte donation. Actually, oocyte
donation is the alternative to mitochondrial donation for those who do
not mind losing the genetic link with the offspring. Therefore, it is
possible to sustain that, by reducing the genetic intervention of third
parties to a minimum, the receivers of mitochondria donation wish to
ensure the anonymity of the donor’s intervention, an aspiration
difficult to sustain for those who apply to more intrusive genetic
interventions (Nuffield Council on Bioethics, 2012).
Nonetheless, in view of the purpose of maximizing the preservation of
the genetic code that the child would have if not for the mitochondrial
donation, there are good reasons to sustain that the donor should not
be a stranger, but rather a close relative of the patient (the genetic
mother). This will rarely be possible because chances are that all
women genetically related to the mother will have the same
mitochondrial mutation, but whenever possible this might be an option
to consider. Lawmakers should analyze whether anonymity should be given
up for the sake of the preservation of the genetic code. Another
possible parallelism between oocyte donation and mitochondrial donation
relates to donor compensation. The laws on gamete donation in Europe
prohibit remuneration, but allow compensation strictly limited to
reimbursement of expenses. The same solution should be valid to
mitochondrial donation. Despite the mentioned similitudes, let us not
forget the differences. Mitochondria cannot be equated to oocytes since
the roles of mitochondrial and nuclear DNA differ significantly; thus,
both donations have to be treated having their particularities in mind.
CONCLUSIONS
We still cannot fully
understand all the mysteries of DNA, but we can certainly go further in
our investigation, in order to be able better control and use DNA to
improve human health and well-being. Despite the hypothetical risks
involved, we cannot exclude mitochondria transfer from our medical
practises. When faced with the possibility of having a child tormented
by a serious and painful illness, feasibly with a short life
expectancy, we believe that mitochondrial transfer should be allowed (Brassington, 2015).
This procedure, as well as many others involving DNA, represents one of
our strongest hopes to deal with suffering and disease. “Every time you
understand something, religion becomes less likely. Only with the
discovery of the double helix and the ensuing genetic revolution have
we had grounds for thinking that the powers held traditionally to be
the exclusive property of the gods might one day be ours…” (James D.
Watson).
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