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kin as PROPERTY

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Questions around the ownership of genetic information also relate to perceptions of autonomy and hierarchy within the family. A family as a group is made of individuals that are often not viewed or treated as equals. Perceptions of ownership are legally and culturally accepted within the traditional family structure.

What is the status of children? Do children “belong” to their parents? And if so, what does this ownership entails? Before adulthood, parents legally own their children’s genetic and medical information, however could parents claim to eternally own their child because they have produced it? Could parents claim ownership of their duplicated genes on the grounds that they own the “original” copy? Since we are all duplicates and nobody can biologically have a source-less genetic makeup, is there even such a thing as genetic autonomy?

The role and autonomy of children varies between cultures and families, Michael Grossberg writes that the English common law tradition regarded children as “assets of paternal estate on which fathers had vested interests. As dependants, sub-ordinate beings, their services, earnings, and the like became the property of their paternal masters in exchange for life and maintenance” (Governing The Heart 1985)

The life long relationship between parent and child is treated there more as a commercial exchange, in which the child is forever in debt for being given life. The child is born as the property of the parent, and the parent determines their lives according to the financial needs of the family. Therefore in adulthood the ownership of a woman was being transferred from the father to the groom. In cultures that still consider a woman to be the husband’s property, would that make him the owner of her genetic information?

There are always parallels between traditional family structures and commerce as historically families were born out of financial deals. Marriage as the institutionalising of human relationships was more or less a business agreement between two families. As such, concepts of ownership, property and autonomy are very much a part of family relationships.

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08 09 2009 Kinship Comments (0) Permalink

OWNERSHIP

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To who does genetic information belong, the individual or the family? Is this information private or collective? Can genes and their functions even participate in any ownership debates?

Surprisingly, The U.S. Patent and Trademark Office has granted thousands of patents on human genes – in fact, about 20 percent of our genes are patented. A gene patent holder has the right to prevent anyone from studying, testing or even looking at a gene.
In the U.S. Myriad has the patent on the BRCA (1 and 2) gene, and is the only address available for those wishing to test for a mutation. Once a test has been done, who owns the results? At the moment Myriad still follows the ethical code of leaving it to the carrier to decide whether to tell.
But could Myriad one day decide to use this information as its own? As the patent holder for the gene could it use the test results for personal marketing and contact all of the carrier’s family members with special offers on the $3,000 BRACAnalysis® tests?

As disturbing as Myriad’s ownership of BRCA is, there is something interesting in taking this issue out of the family sphere and into commerce. Could companies taking over actually free the family from difficult disclosure dilemmas? Could they be used to take the role of the “villain” uniting the family against a common enemy rather than directing blame at each other? And can I sue Myriad if my BRCA gene is defected?

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02 09 2009 ethics Comments (0) Permalink

SHAME

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Another potential reason for keeping genetic information secret (even from those for whom the knowledge will be beneficial) stems from genetic shame. Does genetic shame discourages the carrier from acting? The idea of genetic shame is puzzling but familiar; people are often ashamed of their race, sexual orientation, appearance or disabilities, even though all of these are conditions of birth. Being ashamed of our wrong actions is justifiable, but how can we feel shame for physical or mental attributes we cannot control?

It is parallel to the equally peculiar genetic pride. Unlike Gay pride, Black pride or Deaf pride (all serve to politically correct and empower groups that have been unjustly shamed and discriminated against) why do people take pride in being born with “very strong teeth” or “my mother’s blue eyes”?
I wonder if genetic pride is a form of publicly associating with one’s ancestry, a behaviour which strengthens one’s identity and provides reassurance of their self-worth through distinguishing a direct connection to the achievements of their pedigree. Is this behaviour the remains of class or caste systems where an individual is judged first and foremost by their bloodline? And does that mean we still rely on the state of our family to evaluate or validate ourselves?

Does a genetic mutation brings shame to the family? Making it seem genetically dysfunctional? Inferior? And if so, is it the bearer of bad genetic news that stains the family’s perception of itself? Opening the Pandora’s Box of ills, toils, sickness and hope from which there is no way back.

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01 09 2009 responsibility Comments (0) Permalink

THE MESSENGER

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When one decides to get tested they normally have themselves and any existing or future children in mind. However if a mutation is discovered, they suddenly find themselves thrown into the position of both decision maker and messenger in relation to their extended family members.

Is revealing genetic information to the family a duty, a choice or a crime? Even without any family member going through genetic screenings others can often suspect the genetic risks to their health by knowing the family’s medical history. Is information obtained through family gossip perceived as less damaging than information obtained through scientific facts? Does it have less severe implications as it allows the receiver to enjoy the benefit of the doubt?

Social scientists and ethicists distinguish between active or passive non-disclosure. Where the active approach implies to the carrier makes a conscious decision not to tell their family, and the passive approach means that even though the carrier intended to do so, the information has not been passed.

If the carrier decided that disclosure is the right thing to do, how can they passively neglect to pass the information? Could it have something to do with people’s tendency to “shoot the messenger” when being informed of bad news?

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01 09 2009 responsibility Comments (0) Permalink

IGNORANCE IS BLISS?

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The right not to know is an intriguing concept in this information age. Can knowledge be damaging? And within the genetic moral code, can ignorance be bliss?

Once genetic information is revealed without request, the potential carrier has to deal with the implications of this knowledge while not having the time to emotionally prepare. The privilege of taking the passive approach to one’s future health is taken away, and fatalism or unawareness as exonerating factors can no longer be valid. The informant has confiscated the legitimacy of adopting any passive ways of coping in retrospect.
While genetic knowledge gives one the freedom to make well-informed life choices, ignorance provides the freedom to make such choices without having to consider potential genetic future implications.  As the parent who brought a carrier child into the world without knowing of the familial mutation cannot be blamed like the parent who was aware of their genetic makeup. The genetically ignorant is free from the burden of genetically responsible reproductive considerations.

According to Graeme Laurie the opportunity to choose to remain in ignorance is based on considerations of autonomy of privacy. “Providing a person with unsolicited information about genetic risk (that is, taking away a decision to remain in complete ignorance of a familial risk) may diminish the self-determinative component of their autonomy. This is because providing a person with information about their genetic risk could undermine their ability to make their own decisions (for example, whether or not to remain in ignorance), and could also be seen as paternalistically deciding what is best for another person.” Leonard and Newson

By legitimising the right not to know, can anyone be expected to disclose their genetic information with relatives?

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01 09 2009 responsibility Comments (0) Permalink

DISCLOSURE

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Ethical questions around the disclosure of genetic information to family members can contribute to the nature versus nurture debate. A transmitted mutation is given by nature, but it is in being informed of its existence that behaviour may change.

Although genetic information is inherently familial, to expect it to be distributed between all family members is to assume that a family is a well-functioning group of equals. Family relationships are always emotionally charged, and while these strong emotions can result in a unique closeness and mutual compassion they may also lead to estrangement, revenge, jealousy and grudge. Tolstoy famously said that “every unhappy family is unhappy in its own way”, therefore it cannot be presumed that there is one model for familial relationships, through which patterns of behaviour can be expected. So if one family member discovers their mutation carrier status, are there any guarantees that other relatives will be informed?

According to genetic counsellor Clara Gaff, “qualitative evidence suggests that emotional rather than biological ties will influence who is told about a risk in the family.” So the agents of nurture are favoured in this case, even though the information is predominantly biological and could be expected to be distributed according to patterns of nature.
Gaff points out that when contemplating disclosure, there is also a need for the individual to assess their family members’ vulnerability to the information as well as their receptivity. So the way one’s personality and behaviour are again perceived as more significant than biological proximity.

So what is the moral stance around the disclosure of genetic information? Has a carrier who did not tell his distant family members acted irresponsibly? What is worse, holding back knowledge that may change someone’s life or taking away their right not to know?

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01 09 2009 responsibility Comments (0) Permalink

nature versus nurture

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“a man’s natural abilities are derived by inheritance, under exactly the same limitations as are the form and physical features of the whole organic world.”  Francis Galton, Hereditary Genius, 1869.

The debate around the influence of nature versus nurture on behaviour has been researched for decades. Behavioural genetics experiments have ranged from twins and adoption studies to contemporary molecular genetics analysis (is there a gene for extroversion?).

In a way, Galton’s statement is indisputable, we do inherit our behavioural traits. But are these passed through biology or environment and education? Do we inherit a personality from genes or from culture? If cancer development is influenced by behaviour then would mutation carriers be less likely to develop the disease if not raised by their biological parents?

While there is still a debate between followers of nativism or empiricism theories around the origins of behaviour, there is a slight paradox in separating the two. Treatments that can be seen as derived from these approaches are often very debatable, such as the attempt to treat homosexuality with psychotherapy or the widespread dispense of Ritalin as a chemical quick fix for behavioural problems. Behaviour probably cannot be 100% native, but neither are we born tabula rasa.

Does DNA change behaviour? And more interestingly, could behaviour manipulate DNA? More on that as soon as I complete reading this.

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27 08 2009 behaviour Comments (0) Permalink

CANCER PERSONALITY

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There is something interesting and at the same time disturbing about the idea that cancer emerges as a result of behaviour, or “personality type”.  Following the psychological research on cancer patients that begun in the 1950’s, the type C personality was formulated. So what characterises this “cancer personality”?

Bacon (1952) studied breast cancer patients and found an inordinant amount of unconscious repressed hostility, which he related to an early, pathological relationship with the mother. Many of these patients said that they had never been angry, and there was evidence that relations with others were excessively pleasant. Greer and Morris (1975) also found suppression of anger was correlated with breast malignancy.  Derogatis and Abeloff (1973) noted that in women with breast cancer, those who expressed anger towards the treating physician or towards the disease itself lived longer than those who were compliant and cooperative.

“…abrogating one’s own needs in favour of others, suppressing negative emotions and being cooperative, unassertive, appeasing, and accepting… The Type C individual is considered nice, friendly and helpful to others, and rarely gets into arguments or fights… The Type C individual does not even try to express needs and feelings; these are hidden under a mask of normalcy and self sufficiency” Temoshok (1987)
The Type C personality is characterised by a “stoic” adjustment, and by an “accepting, self-sacrificing” orientation in a person “who struggles to maintain a strong and happy facade”

There is something quite intriguing about the behaviours associated with the Type C cancer prone personality. In any other context these are actually considered to be positive, gracious and honourable character traits. What does it mean to the moral codes and to the way in which children are being educated? Is the stiff upper lip ethos dangerous on the cellular level?

Could education be utilised as a preventive measure to combat cancer through behaviour? Should a carrier parent educate their children to be assertive, emotionally expressive and argumentative in order to compensate for their inherited cancer prone genetic endowment?

Could nurture be employed to nullify nature?

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25 08 2009 meta Comments (0) Permalink

TIME BOMB

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The experience of carrying a genetic mutation is often described as living with an internal time bomb. The amputation of the breasts or ovaries can therefore be seen as an attempt to neutralise it.

In her book Psychotherapeutic Treatment of Cancer Patients, Jane Goldberg claims that “it has been repeatedly observed that cancer often emerges within six to eighteen months following some major emotional loss.” Following Jung, she then goes on to explain the theory that a severe reaction to loss is a fertile soil for the growth of cancer.
“Libido turns inwards and, unable to find there a compensating value, begins to feed upon the body as outer object to the psyche.”

This time frame, six to eighteen months, really brings the time bomb metaphor to life. In these Jungian analytical theories of illness, all of the components are there - the “explosive” ingredients, the trauma as detonator, the specific timer, followed by a chain reaction of destruction.

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25 08 2009 meta Comments (0) Permalink

MONSTERS

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The fear of an alien presence invading the body, nourishing itself from its cells and harming it before departing to become a detached (and sometimes alien) entity, is often attached to the anxiety of pregnancy. In films like Polanski’s Rosemary’s Baby or Lynch’s Eraserhead, this anxiety is represented by the horror of the parent who gave birth to a monster.

The fact that it is Rosemary herself who is ultimately responsible for bringing evil into the world can be seen as reflecting a distress towards the unknown consequences of conception. In her study of woman’s portrayal as a figure of fear in horror films, Barbara Creed states that it is ‘woman’s reproductive functions [which] mark her as monstrous’ (The Monstrous Feminine p.83). The womb is seen as a terrible black hole capable of producing hideous, inhuman life: ‘From classical to Renaissance times the uterus was frequently drawn with horns to demonstrate its supposed association with the devil’ (p.43).

Yet the true horror of Rosemary’s pregnancy lies in the way in which it takes over control of her own body, she is forced to surrender. As her pregnancy advances, she is put through horrifying physical and mental changes, which she cannot comprehend and is helpless to prevent.

Many interpretations of David Lynch’s Eraserhead suggest the film’s narrative and imagery symbolise a subconscious fear of fatherhood. This baby is the horrid manifestation of the fear of parental responsibility; alien, absurd and grotesque, it is a nagging reminder of artificial creation. In Ray Wolfe’s interpretation, “The “Baby” is in reality not necessarily an actual thing. It represents the outcome or consequence of a sin or evil deed [Hamartia?]. It could be an actual baby, which is the outcome of sex, or a condition, such as a disease.”

These films offer a cathartic outlet to unspoken apprehensive feelings towards childbirth. Reproduction is culturally illustrated as a natural and positive process; a blessing. We are not meant to find anything abnormal in the fact that a human grows inside another human - this is what our anatomy is designed to do. Anxieties surrounding this process, and the fear of uncertainty are normally dismissed or kept quiet.
Is it possible that a genetic mutation within the family line can actually provide a source of comfort? The “genuine” risk or danger to the baby might allow the carrier parent to admit and accept these fears, putting the anxiety in the acceptable realm of reality. More so, active intervensions such as embryo selection may provide a sense of control, supervision and certainty.

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19 08 2009 meta Comments (0) Permalink