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The term used by this paper to
encompass all the human forays into the world of biomedical
genetic research and engineering is genetic adventurism , a term
that the researcher hopes conveys the sum and substance of all
that this research symbolizes in terms of its nature and scope;
from analyzing from an Indian perspective, the intricate nuances
of biomedical engineering in this country and to come to the
conclusion that India is ready to approve a leap into genetic
adventurism. Chaos is a buzzword of today. It is modern science’s
euphemism for its incurable ignorance vis-à-vis any cell, animal,
person or event. Science knows that each of the foregoing will be
assertively unique, but science can never predict what exactly it
would be. Science is wiser about the uniqueness only after the
event is a fait accompli. How and why?
At 4:30 p.m. on 19th October,
2005, UNESCO’s General Conference, gathered in Paris for its 33rd
session, adopted the Universal Declaration on Bioethics and Human
Rights. The text, adopted by acclamation, addresses ethical issues related to medicine, life
sciences and associated technologies as applied to human beings,
taking into account their social, legal and environmental
dimensions. The Declaration meets a genuine and growing need for
international ethical standards in this area. This need is due to
the proliferation of practices that go beyond national borders,
often without a regulatory framework.
The text adopted today provides a coherent framework of principles
and procedures that can guide Member States in the development of
national policies, legislation and codes of ethics . Wherever such
an ethical framework is lacking, the Declaration will incite and
assist in filling the gap . While it is still up to States to
create legal texts and instruments appropriate to their cultures
and tradition, the general framework proposed by the Declaration
can help globalize ethics in the face of the increasingly globalized sciences.
The first principle
established by the Declaration is the respect of human dignity and
human rights, with an emphasis on the following two points:
The interests and welfare of the individual
should have priority over the sole interest of science or
society. And If the application of
the principles of this Declaration is to be limited, it should be
by law, including laws in the interests of public safety, for the
investigation, detection and prosecution of criminal offences, for
the protection of public health or for the protection of the
rights and freedoms of others. Any such law needs to be consistent
with international human rights law. Several other
principles are set forth. Some are already well-established
informed consent, respect for
privacy and confidentiality, non-discrimination and
non-stigmatization but the notion of social responsibility is
new. It stresses that progress in science and technology should
promote the well-being of individuals and of humanity, notably by
improving access to quality health care and essential medicines as
well as to adequate nutrition and water. The principle of sharing
benefits is also affirmed (different forms of sharing are
proposed), as is the safeguarding of the environment, the
biosphere and the various biodiversities.
Science Versus Technology: Einstein
Versus Frankenstein
Science is superior to any resultant technology, that
is the argument in this section of the paper. There may be misuses
and manipulations of all the technologies that are harnessed by
science, but the science - the knowledge behind it all is
indefatigable, and that is why it is superior to any resultant
technology. The ‘sanctity of life’
argument that supremacists in the West have raised to point out
the Einstein versus Frankenstein dichotomous possibilities in
genetic adventurism is defeated on this account. The argument that
‘naturally’ born children are ‘better’
than ‘artificially’ created ones
starts off with a truckload of assumptions. What is ‘natural’, and
then again, what is ‘unnatural’. My
contention is this is not the ‘sanctity of
life’ violated by treating it in certain ways, as history is
witness to and the past has shown will there not always be
rapists, murderers, despots, wars, and human tragedies that will
militate against the so-called ‘sanctity of life’? In response to
that, it can only be said that there is no ‘wrong’ in science. The
anti-science is always a resultant technology.
What is this thing called science?
The possibility of human cloning, raised when Scottish scientists
at Roslin Institute created the much-celebrated sheep ‘Dolly’,
aroused worldwide interest and concern because of its scientific
and ethical implications. The feat, also generated uncertainty
over the meaning of ‘cloning’ - an umbrella term traditionally used
by scientists to describe different processes for duplicating
biological material.
What is cloning? Are there different types of cloning?
There are different types of cloning and cloning technologies can
be used for other purposes besides producing the genetic twin of
another organism. A basic understanding of the different types of
cloning is key to taking an informed stance on current public
policy issues and making the best possible personal decisions. The
following three types of cloning technologies exist:
(1)
recombinant DNA technology or DNA cloning, (2) reproductive
cloning, and (3) therapeutic cloning.
Reproductive cloning is a technology used to generate an animal
that has the same nuclear DNA as another currently or previously
existing animal. Dolly was created by reproductive cloning
technology. In a process called ‘somatic cell nuclear transfer’ (SCNT),
scientists transfer genetic material from the nucleus of a donor
adult cell to an egg whose nucleus, and thus its genetic material,
has been removed. The reconstructed egg containing the DNA from a
donor cell must be treated with chemicals or electric current in
order to stimulate cell division. Once the cloned embryo reaches a
suitable stage, it is transferred to the uterus of a female host
where it continues to develop until birth. Dolly or any other
animal created using nuclear transfer technology is not truly an
identical clone of the donor animal. Only the clone’s chromosomal
or nuclear DNA is the same as the donor. Some of the clone’s
genetic materials come from the mitochondria in the cytoplasm of
the enucleated egg. Mitochondria, which are organelles that serve
as power sources to the cell, contain their own short segments of
DNA. Acquired mutations in mitochondrial DNA are believed to play
an important role in the aging process.
Dolly’s success is truly remarkable because it proved that the
genetic material from a specialized adult cell, such as an udder
cell programmed to express only those genes needed by udder cells,
could be reprogrammed to generate an entire new organism. Before
this demonstration, scientists believed that once a cell became
specialized as a liver, heart, udder, bone, or any other type of
cell, the change was permanent and other unneeded genes in the
cell would become inactive. Some scientists believe that errors or
incompleteness in the reprogramming process cause the high rates
of death, deformity, and disability observed among animal clones.
Therapeutic Cloning
Therapeutic cloning, also called ‘embryo cloning,’ is the
production of human embryos for use in research. The goal of this
process is not to create cloned human beings, but rather to
harvest stem cells that can be used to study human development and
to treat disease . Stem cells are important to biomedical
researchers because they can be used to generate virtually any
type of specialized cell in the human body. Stem cells are
extracted from the egg after it has divided for 5 days. The egg at
this stage of development is called a blastocyst. The extraction
process destroys the embryo, which raises a variety of ethical
concerns. Many researchers hope that one day stem cells can be
used to serve as replacement cells to treat heart disease,
Alzheimer’s, cancer, and other diseases.
In November 2001, scientists from Advanced Cell Technologies
(ACT), a biotechnology company in Massachusetts, announced that
they had cloned the first human embryos for the purpose of
advancing therapeutic research. To do this, they collected eggs
from women’s ovaries and then removed the genetic material from
these eggs with a needle less than 2/10,000th of an inch wide. A
skin cell was inserted inside the enucleated egg to serve as a new
nucleus. The egg began to divide after it was stimulated with a
chemical called ionomycin. The results were limited in success.
Although this process was carried out with eight eggs, only three
began dividing, and only one was able to divide into six cells
before stopping.
How can cloning technologies be used?
Recombinant DNA technology is important for learning about other
related technologies, such as gene therapy, genetic engineering of
organisms, and sequencing genomes. Gene therapy can be used to
treat certain genetic conditions by introducing virus vectors that
carry corrected copies of faulty genes into the cells of a host
organism. Genes from different organisms that improve taste and
nutritional value or provide resistance to particular types of
disease can be used to genetically engineer food crops. With
genome sequencing, fragments of chromosomal DNA must be inserted
into different cloning vectors to generate fragments of an
appropriate size for sequencing.
Should humans be cloned?
Physicians from the American Medical Association and scientists
with the American Association for the Advancement of Science have
issued formal public statements advising against human
reproductive cloning. Currently, the U.S. Congress is considering
the passage of legislation that could ban human cloning - this was
passed in early October last year, but has not yet been enforced
against labs. In India, the debate about having enforceable
legislation against human cloning is still not priority issue.
The same problems would be
expected in human cloning. In addition, scientists do not know how
cloning could impact mental development. While factors such as
intellect and mood may not be as important for a cow or a mouse,
they are crucial for the development of healthy humans. With so
many unknowns concerning reproductive cloning, the attempt to
clone humans at this time is considered potentially dangerous and
ethically irresponsible.
Ethics Meets The Anti-Science
Ethical Questions In Human Genetics
Progress in methods of manipulation of cell calls for progress in
the development and support of an ethos of manipulation. A general
ban on manipulation would be moral and cultural malpractice . In
fact regulation carries greater moral risks and hazards than an
individual’s options to choose and to follow his or her
conscience.
The human genome is the common heritage of humankind and
humankind’s link to other forms of life. Traditional moral
principles such as autonomy, privacy, justice, equity, literacy,
and responsibility have to be redefined in the light of benefits,
risks and uncertainty of applying genetic knowledge. Moral and
cultural traditions play an important role in shaping individual
and society’s competence to deal with new challenges. Traditions
may not be used in an individual way, as traditions also contain
antiquated customs, which have to be cut off.
The question of India
- Promise and the Price
Bioethics in India is almost non-existent . There is lack of
knowledge relating to issues of gene therapy accompanied by lack
of discussion about these issues at various levels. There is need
for a broad public education system in heath literacy and
individual health responsibility. Such education programs should
be introduced into the curricula at school level and included at
the college/universities level also. A center for ethics in
sciences in general and genetic and medical ethics in particular
needs to be established, because of the pluralistic nature of the
Indian society which is multicultural, multi-religious and
multi-ethnic.
We must master the benefits and risks of genetic knowledge as well
as the power of manipulation to strengthen the ethos and ethics of
responsibility in support of individual self-determination,
cultural diversity and political stability. The UNESCO Declaration
also covers the application of the principles embodied in the
Indian ICMR Guidelines, calling for
professionalism, honesty, integrity and transparency in
decision-making as well as the creation of independent,
multidisciplinary and pluralist ethics committees. Referring to
transnational practices, it specifies: When
research is undertaken or otherwise pursued in one or more States the host State(s) and funded by a source in another
State, such research should be the object of an appropriate level
of ethical review in the host State(s) and the State in which the
funder of the research is located. This is similar to a lot of
the ideals the 2000 Guidelines speak about in the Indian context,
but the qualitative difference comes, as usual, in the chasm
between policy and implementation.
Reprogenetics And ‘Playing God’
Genetic Privacy And Privacy Laws
The origin of this polemic lies in the fact that various parties
have valid claims to the same information family members,
research associates and the patients themselves. The UNESCO
Universal Declaration on the Human Genome and Human Rights states
in Article 5 I that the right of every individual to decide
whether or not to be informed of the results of genetic
examination and resulting consequences should be respected. The
efficacy of grounding such a right solely in terms of choice is
doubtful . In the US, the Genetic Privacy Act, 1995 was drafted as
part of the ELSI and this legislation protects what it delineates
as the ‘genetic rights’ of every person . Especially in case of
children, who may be carriers of fatal genes and similar
threatening situations , the question before the wisdom of medical
jurisprudence is which approach to adopt the parental ‘imagined
consent’ approach or the ‘best interest’ approach? It is submitted
that the parental discretion approach is the incorrect method to
adopt since the child / carrier may be subject to stigmatization
on these grounds. Secondly, a child’s genetic status is the
child’s private genetic information and should not be determined
or disclosed unless there exists compelling reason to do so.
Human
Rights And Human Experimentation & Research
The best interests of children, fetuses and embryos are all
different issues and raise concerns at different levels. That is
the primary argument for rejecting UNESCO’s model of clubbing
anyone below the age of 16 in the same bracket
they ignore
persons who have no age at all the embryos and fetuses.
There needs to be a recognition of the moral status of the unborn
human life. Dilemma between the pro-life and pro-choice groups has
lead to the debate in which the pro-life groups recognize the
fertilized egg to be protected like any other person and will not
accept determinative research in the early embryo . They do not
accept embryo research but accept benefits from such research.
Many bio-ethicists recommend that the benefits should not be used,
but they may be used for dying and suffering patients and when one
might feel there is no need to care how the remedies are obtained.
Once a technology has been developed for a good purpose it can be
used for moral as well as immoral purposes. The needs of
developing countries are so great that the First World should show
greater understanding, brotherhood and concern for the development
of the best possible technologies . Human manipulation of nature
mirrors human self-understanding, values and morals; the clue to
avoid risk in technology is to strengthen individual and cultural
competence in moral risk assessment and personal responsibility .
New knowledge and new forms of manipulation challenges human race
and human culture with wider dimensions of responsibility and risk
competence. They require development of an ethos and ethics of
responsibility. One cannot agree with those ethicists who ask for
a ban or severe control of the development and use of new
technology.
The cases of misplaced
motherhood, jeopardized family relations and other skewed social
equations are linked to the issues thrown up by genetic
adventurism . Consider the case of the human doppelganger created
by cloning a single, fertile female the
child would be similar in all genetic senses to the ‘mother’; who,
having brought the child to term, would be the biological parent
of the child, but she would not be its genetic mother; the genetic
parents would be the single set of grandparents, or the parents of
the adult female . So the child and her mother would be twin
sisters, and the children of the child would be the children of
the mother these are the possibilities thrown open by re-progenetics; defying all socially accepted norms and
institutions and fiercely protected mores in social relationships.
Re-progeneticists have come up with even more fascinating
possibilities for the future of the ‘Brave New World’ . A pregnant
woman carrying a female fetus within her body is carrying not only
her daughter, but also the egg that will give rise to her grand
daughter and part of the genetic combination for her great grand
daughter so, the egg that gave rise to her, was produced by her
mother’s body when she was still a fetus !
Supposing a female fetus is aborted, but the newly formed ovaries
are salvaged from its body; the eggs in those can be made to
mature under suitable conditions and generate an embryo; the child
born from this will be the child of a mother who was never born .
The protocol antithesis of the debate centering on these issues in
re-progenetics is based on the wholly misconstrued ideas of genetic
adventurism that have been popularized over the years.
Conclusion: From Here...To Where?
The overwhelming scientific consensus is that genetic determinism
is false. In coming to understand the ways in which genes operate,
biologists have also become aware of the myriad ways in which the
environment affects their expression. The genetic contribution to
the simplest physical traits, such as height and hair color, is
significantly mediated by environmental factors (and possibly by
stochastic events as well). And the genetic contribution to the
traits we value most deeply, from intelligence to compassion, is
conceded by even the most enthusiastic genetic researchers to be
limited and indirect.
It is difficult to gauge the extent to which ‘repugnance’ toward
cloning generally rests on a belief in genetic determinism. Hoping
to account for the fact that people ‘instinctively recoil’ from
the prospect of cloning, James Q. Wilson wrote, ‘There is a
natural sentiment that is offended by the mental picture of
identical babies being produced in some biological factory. ’
Which raises the question: once people learn that this picture is
mere science fiction, does the offense that cloning presents to
‘natural sentiment’ attenuate, or even disappear
- Jean Bethke
Elshtain cited the nightmare scenarios of ‘the man and woman on
the street,’ who imagine a future populated by ‘a veritable army
of Hitler's, ruthless and remorseless bigots who kept reproducing
themselves until they had finished what the historic Hitler failed
to do: annihilate us.’ What happens, though, to the ‘pity
and terror’ evoked by the topic of cloning when such
scenarios are deprived (as they deserve to be) of all credibility
Until recently, there were few ethical, social, or legal
discussions about human cloning via nuclear transplantation, since
the scientific consensus was that such a procedure was not
biologically possible. With the appearance of Dolly, the situation
has changed. But although it now seems more likely that human
cloning will become feasible, we may doubt that the practice will
come into widespread use.
I suspect it will not, but my
reasons will not offer much comfort to the critics of cloning.
While the technology for nuclear transplantation advances, other
technologies notably the technology of
genetic engineering will be
progressing as well. Human genetic engineering will be applicable
to a wide variety of traits; it will be more powerful than
cloning, and hence more attractive to more people. It will also,
as I have suggested, raise more troubling questions than the
prospect of cloning has thus far. - Robert Wachbroit
Essentially, through this paper, the hope is being expressed that,
by a systematic breakdown of arguments against genetic
adventurism, largely a First World imposition on the Third World,
it can be shown that there is nothing inherently evil, wrong or
unnatural about genetic adventurism; in this slippery slope of
human existence that we are teetering on today, it is the thinking
community of the world alone that makes any judgments, decisions
or steps and it is time India took that step ahead.
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Introduction To The World Of Genes And Genetic Adventurism
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The
author can be reached at:
rashmiraman@legalserviceindia.com /
