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e-Health and Commercial Genetic Testing

Veritas Diagnostics is a
susceptibility testing for a
business involves testing
kidney
disease,
as

medical diagnostics company specializing in adult genetic


range of heritable and complex genetic conditions. Their main
for the mutations associated with cystic fibrosis, hereditary
well
as
breast,
ovarian
and
colorectal
cancer.

They have a well-staffed, well-run, sophisticated genetics laboratory capable of rapidly


processing hundreds of samples for analysis on their many automated high-throughput
DNA sequencers. Veritas considers their testing methodology to be the 'gold standard'
and to that end, implement the latest testing technologies as they become available.
Further, Veritas maintains good working relations with a number of leading university
research laboratories, with whom they regularly verify their testing methods.
Veritas' chief clientele to date has consisted of hospitals, physicians, and private insurers
ordering genetic testing for patients. The company has become known for providing
quick, accurate, and confidential services at a competitive price. The Veritas Board of
Directors has recently decided to expand the existing market and begin offering
commercial genetic testing services direct-to-consumer through the company website.As
corporate Ethics Officer, you've been asked to work with the Vice President in charge of
the new Direct-to-Consumer division to ensure that services are provided in an ethical
manner. As far as the VP is concerned, the only ethical issue is consumer privacy, and
given that Veritas already has privacy rules in place for dealing with physicians, hospitals,
and insurance companies, the VP does not see that much needs to be changed for directto-consumer
services.

You, however, see the situation as being more complex, and so are faced
with convincing the VP that the following ethical questions must also be
addressed:
Should Veritas Diagnostics provide in-house genetic counselling, and
can this counselling be unbiased? If not, should arrangements be
made with private and public genetic counselling programs, and who
should pay for it?
Should Veritas have a formal ethics policy statement dealing
specifically with issues related to marketing genetic tests directly to
consumers, and should it be online?
What are the information privacy issues for consumers as compared
with
physicians
or
hospitals?
- E.g., should 'cookies' be used on the website, to store information
about potential customers? Will the information gathered be used
only for improved customer service or also sold to third parties?
- Who owns the genetic material used for testing - the consumer or
Veritas? Can the material be sold for research purposes?
What limits on direct-to-consumer genetic testing are imposed by
national or international regulations or oversight mechanisms ?
How should Veritas be working with various national health care
institutions...as a contractor of services or as a competitor?
Will Veritas accept samples sent by employers? That is, will Veritas

The Polluter's Dilemma


Jonica Gunson is the environmental compliance manager for a small plastics manufacturing
company. She is currently faced with the decision whether or not to spend money on new
technology that will reduce the level of a particular toxin in the wastewater that flows out the
back of the factory and into a lake. The factory's emission levels are already within legal limits.
However, Jonica knows that environmental regulations for this particular toxin are lagging
behind scientific evidence. In fact, a scientist from the university had been quoted in the
newspaper recently, saying that if emission levels stayed at this level, the fish in the lakes and
rivers in the area might soon have to be declared unsafe for human consumption.
Further, if companies in the region don't engage in some self-regulation on this issue, there is
reason to fear that the government backed by public opinion may force companies to begin
using the new technology, and may also begin requiring monthly emission level reports (which
would be both expensive and time consuming).
But the company's environmental compliance budget is tight. Asking for this new technology to
be installed would put Jonica's department over-budget, and could jeopardize the company's
ability to show a profit this year.
Questions that she has to ask herself
What motives would the company have to install the new technology?
What motives would the company have to delay installing the new technology?
Why might the companies in this region prefer for the government to impose new regulations?

Whistleblowing & the Environment: the Case of


Avco Environmental
Chantale Leroux works as a clerk for Avco Environmental Services, a small toxic-waste disposal
company. The company has a contract to dispose of medical waste from a local hospital. During
the course of her work, Chantale comes across documents that suggest that Avco has actually
been disposing of some of this medical waste in a local municipal landfill. Chantale is shocked.
She knows this practice is illegal. And even though only a small portion of the medical waste
that Avco handles is being disposed of this way, any amount at all seems a worrisome threat to
public health.
Chantale gathers together the appropriate documents and takes them to her immediate superior,
Dave Lamb. Dave says, "Look, I don't think that sort of thing is your concern, or mine. We're in
charge of record-keeping, not making decisions about where this stuff gets dumped. I suggest
you drop it."
The next day, Chantale decides to go one step further, and talk to Angela van Wilgenburg, the
company's Operations Manager. Angela is clearly irritated. Angela says, "This isn't your
concern. Look, these are the sorts of cost-cutting moves that let a little company like ours
compete with our giant competitors. Besides, everyone knows that the regulations in this area
are overly cautious. There's no real danger to anyone from the tiny amount of medical waste that
'slips' into the municipal dump. I consider this matter closed."

Chantale considers her situation. The message from her superiors was loud and clear. She
strongly suspects that making further noises about this issue could jeopardize her job. Further,
she generally has faith in the company's management. They've always seemed like honest,
trustworthy people. But she was troubled by this apparent disregard for public safety. On the
other hand, she asks herself whether maybe Angela was right in arguing that the danger was
minimal. Chantale looks up the phone number of an old friend who worked for the local
newspaper.
Question that chantale has to ask himself:
What should Chantale do?
What are the reasonable limits on loyalty to one's employer?
Would it make a difference if Chantale had a position of greater authority?
Would it make a difference if Chantale had scientific expertise?

Ban on Tobacco Ads by the Government of


India: Introduction
On Feb 6, 2001 Government of India (GOI) dropped a bombshell on the tobacco Industry when it
announced that it would shortly table a bill banning Tobacco Companies from advertising their
products and sponsoring sports and cultural events. The objective of such a ban was to
discourage adolescents from consuming tobacco products and also arm the Government with
powers to launch an anti-Tobacco Program.
This decision seemed to have sparked an intense debate, not just over the ethical aspects of
Government's moral policing but also over the achievability of the objective itself. Reacting
strongly against the proposed ban, Suhel Seth, CEO, Equus Advertising said, "The ban does not
have teeth. It is a typical knee-jerk reaction by any Government to create some kind of popularity
for
itself.
The Legislation has not been thought thorough". In its reaction to the GOI's decision, ITC Ltd 1.
announced that it would voluntarily withdraw from all of the sponsorship events, irrespective of
the legal position on the subject.
In a statement it said, "ITC believes that this action on its part will create the right climate for a
constructive dialogue that will help develop appropriate content, rules & regulations to make the
intended legislation equitable and implementable". The complexity of the issue was that, the
issue involved the tussle between the ethical and commercial considerations. On the one hand,
was tobacco, the most dangerous consumer product known, which killed when used as the
makers' intended. Therefore from an ethical standpoint, the Government had to discourage the
habit, as it was responsible for the welfare of its citizens.

On the other hand, the tobacco Industry was a major contributor to the State Exchequer (In the
Year 2000-01 it contributed about Rs. 8000 crores in excise revenue) which was extremely
important, given the financial crunch which it faced. In the light of the above statements, what
approach should the government choose-the ethical or commercial and is it proper for
government to interfere in matters of personal choice in the first place? To make the matter more
complex, there was the question- was the objective achievable at all and was it equitable? The
answers to these questions lay in understanding the viewpoints of both sides-those in favour and
those against such bans.

The Ayes'
The ban was not unusual keeping in view the international precedents. Countries like France,
Finland, and Norway had already imposed similar bans. Advocates of free choice opposed to
these bans, saying these amounted to unwarranted intrusion by the state in the private lives of its
citizens. But, others pointed out that the state had the right to intervene in the overall interest of
the citizens. They cited the example of drugs like cocaine, which was, banned the world over.
In 1981, the Supreme Court (of Appeal) in Belgium gave its ruling that a ban on tobacco
advertising was not unconstitutional. In 1991 the French Constitutional Council declared that the
French ban on advertising tobacco products was not unconstitutional as it was based on the need
to protect public health and did not curtail the freedom of trade. There were many precedents of
restrictions being imposed on the advertising of dangerous or potentially dangerous products
even if these products remained in the market (e.g. firearms, pharmaceutical Products).

According to the World Health Organisation (WHO), tobacco accounted for over 3 million deaths
in 1990, the figure rising to 4.023 million deaths in 1998. It was estimated that tobacco related
deaths would rise to 8.4 million in 2020 and to 10 million in about 2030. There was an increasing
fear that tobacco companies were inducing children and young people to begin experimenting
with tobacco products, and in this way initiate regular smoking, as this held the key for the
industry to flourish.
Internal industry documents2 released in the United States, described 14-24 year olds as
'tomorrow's cigarette business.' In a case which started in 1991 and ended in 1997, RJ Reynolds
Tobacco company, marketer of Camel cigarettes, was forced to withdraw its mascot, Joe Carmel,
an animated camel, from all its advertisements, after the California Supreme Court (USA) ruled
that the company could be prosecuted for exploiting minors.
The accusation was that the slick, colourful advertisements (using an animated camel) appealed
to the children and encouraged them to smoke. In India, analysts estimated that cigarettes
contributed only 0.14% of the G.D.P and the health costs roughly translated to 0.21% of the
G.D.P. So the revenue logic of huge contribution in the form of excise to the Exchequer did not
seem to be valid. Also, given the state's significant contribution to health care, smokers, by
damaging their health were in fact enhancing the State's expenditure. Questions were also raised
about the economic impact of such a ban, given the fact that the tobacco industry provided direct
and indirect employment to 26 million people.

The Nays
Those who opposed the ban contended that by putting a ban on advertisements and
sponsorships by tobacco companies, the state was effectively stepping in to tell smokers that
they were incapable of deciding by themselves what was good or bad for their health and that,
therefore it had to play the role of a responsible nanny. Said Amit Sarkar, Editor, Tobacco
NewS, "Adults who consume tobacco do so of their own free choice. The risk falls entirely on
them
and
is
fully
explained
to
them.
If we lose sight of this principle, then we lose sight of the truth on which all the free societies
depend, namely that freedom and risks are inextricable, and whomsoever assumes the right to
save us from risks, is also assuming right to limit our freedom". The Supreme Court in
Canada, held, "The State seeks to control the thought, beliefs and behavior of its citizens
along the line it considers acceptable. This form of paternalism is unacceptable in a free and
democratic society".
Also, if it were legal to manufacture and sell tobacco products, it should be legal to advertise
it as well. Tobacco companies around the world have been vehemently denying that they sell
the concept of smoking. They insist that the role of marketing, was merely to assist adults in
making an informed brand choice and that advertising merely enhanced the market share of a
particular
brand.
The companies claimed that advertising for a particular brand was most relevant to consumers
who already smoked that brand. Cigarette advertisements were least relevant to people who
did not smoke and were neither directed at them nor likely to influence them.In 1998, in a
survey conducted by the Indian Market Research Bureau (IMRB), 49% of the respondents
said they started smoking to see what it was like, 24% said 'all my friends smoke'; and no one
said advertising had induced them to start smoking.

The Haze
Tobacco consumption was growing in the developing countries while it was falling in the
developed countries. Concerned over the welfare of its citizens, who were fast becoming a
prey, the Indian government decided to ban advertising by tobacco companies as a first step
towards its goal of discouraging smokers. But the advocates of free choice and the cigarette
companies (the worst hit in the tobacco industry when the ban was imposed) insisted that
ban was no solution to the problem.
Said Shunu Sen, CEO, Quadra Advisory, "Excess of anything is bad. Excess of coffee,
tea...whatever. Where do we draw the line?" They argued that that the ban was unjustified,
as advertisements didn't promote smoking, and that the ban was not the right solution to the
problem. The Cigarette companies expressed concern that the ban would deny them levelplaying
field.
The issues discussed above at best gave an idea of how complex the problem was. This was
the crux of the problem. The problem itself seemed so intricate as it questioned the very
domain of propriety; both ethical and commercial and the 'ifs and buts' were too hazy and
one too many. No wonder the debate over the state control on tobacco consumption was
clouded in an enigmatic tussle-a tussle between rhetoric and plain talk, of arguments and
counter arguments, of claims and counter claims. Only time would say who would have it,
the Ayes or the Nays.

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