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Cultural Awareness and Common Understanding:
the Key to Informed Consent
Bobbie FARSIDES
Thank you for inviting me back this year. And
thank you for talking about the importance of informed consent,
especially within the context of culture.I would like to look
at the relationship between ideas of consent and contract
and the notion of culture.
Background
In bio-ethics, particularly research ethics,
we do recognise the importance of informed consent, but we
often fail to think about why it is so important and the context
into which it fits.
The vocabulary and conceptual ideas of consent
are bound up in the idea of contract. The moral and legal
significance of consent cannot be fully understood without
thinking about the idea of contract. A contract is usually
for an exchange sufficiently important to need some control
or be bound in some way by ideas of duty, obligation, rights
and entitlement. This is the vocabulary of contract and the
vocabulary into which the idea of consent fits. Consent binds
people together in a particular relationship often defined
in terms of reciprocal duties and obligations on one hand,
and rights and entitlement on the other. Sadly, it is not
necessary that it be a just or equitable exchange. But when
we engage the idea of contract and consent in research, we
have to strive towards a balanced, equal, just contract.
Consent
I spend a lot of time thinking about how to define
the terms we use readily in everyday life. To define consent,
we have to look beyond definitions in existing research ethics
documents. We also have to look at the notion of meaning.
Why have people defined a term in a certain way? What do we
take to be different acceptable forms of consent? What do
we commonly understand in different contexts as adequate signs
of consent? How can we use different examples of consent to
explore these different aspects?
Defining Consent
My favourite definition of consent was written
by Dr Raanan Gillon in an introductory book on medical ethics,
Philosophical Medical Ethics (Wiley, 1986, p. 113). He is
surprised that I use his definition so enthusiastically, but
I find it to be a full, robust definition. He defines consent
as "a voluntary uncoerced decision made by a sufficiently
autonomous person, on the basis of adequate information, to
accept or reject some proposed course of action that would
affect him or her."
There are many different components to this definition:
the capacity of the person making the decision, the information
that person has received and the context, which may determine
whether or not the person genuinely had the opportunity to
make a decision. This definition of consent is a demanding
one.
The political philosopher John Plamenatz studied
consent in a political context. He was interested in what
it takes for us to genuinely consent to the ruling government.
He wrote, "If you look out at the world and think, on the
basis of my definition, that no one has truly consented to
be governed, don't attack my definition but start thinking
about the world that you live in." We can afford to use a
definition that sets very high standards in order to judge
the world in which it will operate.
We also need to understand the meanings people
attach to consent. Social psychologists can tell us about
how consent is socially represented in different communities
and shared understandings and meanings of consent. People's
experiences may lead to their having low standards or inadequate
ideas about what consent is meant to achieve. Moreover, the
people who employ the concept may themselves mean different
things. In the UK recently, for example, studies have shown
that many patients believe consent is about the legal protection
of doctors.
Different Forms of Consent
Consent need not always take an express form
such as a signature. There is also tacit consent, in which
case people give signs of consent without expressly stating
consent in written form. There is even the notion of hypothetical
consent, the idea that you can do something to or for someone
in the absence of consent, if you are clear that once in a
position to give consent, or had that person been in a position
to give consent, they will or would have done so. These different
forms of consent are not appropriate to all contexts. However,
a signature has often been perceived as the strongest sign
of consent in a research setting. But in order to avoid ethically
unstable ground, we also have to combine the signature with
an understanding of what people are tacitly doing at the same
time. We also have to consider whether or not we would feel
comfortable doing what we are doing if we did not have signed
consent.
Signs of Consent
There are also different signs of consent:
- Attendance or response to an invitation
- Lack of objection
- Cooperation
- Agreement
- Signature
- Ongoing involvement
These may or may not be signs of consent. We
need to establish to what degree we can accurately translate
our ideas of what should and should not be taken as a sign
of consent into another context. Consider, for example, an
auction. Attending an auction for the first time, one might
not know that raising a hand or waving a piece of paper would
mean wishing to place a bid. But after going to a few auctions,
one would come to understand the conventions and know that
actions that in another context would be meaningless are binding
in a full and contractual way.
At a medical examination for a sore throat, if
the doctor asks to look into the patient's mouth, he would
most likely understand the shared endeavour and would easily
give consent. However, if the doctor asked the patient to
undress and proceeded with a half-hour examination, he might
be become worried, as it is not what he had been expecting.
In the UK, many people think that far too much
is assumed about what we would and would not consent to in
ante-natal care. Doctors run a whole battery of tests on pregnant
mothers and there is a debate about whether or not that is
appropriate.
Finally, there is the notion of marriage. In
different cultural settings, we have very different ideas
about what we do and do not consent to as part of the contract
of marriage.
Culture
When I started to look for a definition of culture,
I found something completely inappropriate. The first definition
stated that culture is "organised in in-vitro growth of micro-organisms
on nutrient media." It might mean something to you, but is
very unfamiliar to me. This definition comes from another
world and has no relevance in this context.
Defining Culture
"Culture is the meanings, values and ways of
life of a particular group."
A slighter fuller definition states, "Culture
refers to the cumulative deposit of knowledge, experience,
beliefs, values, meanings, hierarchies, religion, notions
of time, roles, spatial relations, concepts of the universe
and material objects and possessions acquired by a group of
people in the course of generations through individual and
group striving."
Culture and Consent
Culture is relevant to ethics. We wonder if ethics
should be defined by culture, or if ethics should transcend
culture. Do different cultures have different ethics, and
should they? How do we interact as different cultures when
we have ethical problems with what one culture is doing in
one of these areas?
Language and Culture
We need a shared language to understand notions
of contract and consent. Language and culture are inextricably
bound up together.
Social Context and Meaning
To understand how consent could operate in a
particular context, possible obstacles and how to facilitate
consent requires an understanding of social context and the
meaning we are using.
Layers of Culture
In the 1960s, there was a popular song, "The
World is Just a Great Big Onion." This notion of an onion
comes up a great deal in discussions about culture. Hofstede
has a complex theory about onions and culture. He says that,
to understand culture, you have to understand the core, or
the "broad tendencies of groups to prefer certain states of
affairs over others." These values are the most hidden layer
of culture, but it is what concerns people who work in ethics.
According to Aristotle, the fundamental question of ethics
is, "How should I live?" Virtue ethicists look at the question
of "How should I be as a person?" Any person concerned with
ethics wants to know how the world can be a better place than
it is now.
Hofstede says that values strongly influence
behaviour. But in order to identify these values, we have
to strip away the layers above them, or the outer rims of
the onion. He describes three more clearly observable layers
of culture: rituals, heroes and symbols. If one can understand
these elements, one can start stripping away the outer layers
to move towards the values.
Cultural Awareness
Many years ago, I heard an interview with a worker's
representative in the UK, who was considered to be a strong
socialist representative. When asked what newspaper he read,
he responded, to everyone's surprise, that he read the Financial
Times every day. When asked why, he responded that if the
markets depended on it, it had to tell the truth. In other
words, if the economic system depended on it, it had to work
and give information in the right way.
In a review of Hofstede's work, a businessperson
states, "Knowing the difference in cultures and how to use
them to everyone's advantage is critical to your company's
success. Ignore this one at your peril, because at least one
of your competitors is starting to implement the knowledge
already. We starting using the information by the time I got
through the second chapter."
It is very obvious that the business world sees
cultural awareness as a key to good business. The interesting
turn is, "how to use it to your advantage." The contract will
not be equal, and the party with business acumen will have
the advantage. But that does not mean that we cannot use this
same understanding to form contracts of different types.
Equal Contract
Prerequisites
0 Shared understanding of the nature and purpose
of contract and the contract in question. It has to be made
clear why this is happening.
1 Shared commitment to the adoption of the contractual
model. Why is it important to have consent? Why is it important
to formulate this exchange in a contractual manner?
2 Mutual understanding of the status of each
party. Advantages and disadvantages have to be clarified and
dealt with.
Goals and Boundaries
0 The nature of the pursuit. What is in it for
you? What is in it for me?
1 The nature of exchange. What can you do for
me and what must I do for you? What can I do for you and what
must you do for me?
The Parties
On one side, there are the researchers. They
are powerful because they have knowledge, although there is
knowledge they still want to gain. And they are powerless
in the face of their sponsors and the constraints on them
placed by funding, guidance and standards. They are educated
in Science, Medicine and the pursuit of knowledge, but are
inexperienced in working in the particular context in which
they find themselves. They may be insiders and/or outsiders.
On the other side, there are the participants.
They may be proud of their culture and culturally aware, but
they may not realise that their cultural patterns may make
them less autonomous or challenge some of the ideas of individual
freedom that another culture might hold dear. They may see
researchers as "other" or as "of their own kind." Both scenarios
generate challenges. And they may be free and autonomous,
un-free and non-autonomous, free and non-autonomous or un-free
and autonomous. We need to know which categories they fit
into.
The Route to Progress
Hofstede convinced me that the title I chose
for this talk is inadequate. Cultural awareness is only the
first step. Once we are aware of differences, we have to build
knowledge and understanding. Then, we have to acquire skills
to help accommodate those differences and utilise knowledge
to the benefit of all parties. Thank you very much.
Solomon BENATAR
Our next speaker is Richard Ashcroft. He is head
of the Medical Ethics Unit at Imperial College in London.
He originally trained in philosophy and mathematics at Cambridge
and has taught at many universities, including Cambridge,
Liverpool and Bristol, before taking on his current position.
His main interests are research ethics, ethical issues in
genetics and the ethics of public health.
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