Teil A: Text production

Adam Rutherford: DNA ancestry tests may look cheap.
But your data is the price

Do customers realise that genetic genealogy companies like 23andMe profit by amassing huge biological datasets?

In 1884, at the International Health Exhibition in South Kensington, four million

punters came to view the latest scientific marvels: drainage systems, flushing toilets

and electrically illuminated fountains. There, the scientist Francis Galton set up the

Anthropometric Laboratory, where common folk would pay 3d (around 80p today) to

enter, and anonymously fill out a data card. Galton's technicians recorded 11 metrics,

including height, hair colour, keenness of sight, punch strength and colour

perception, and the ability to hear high-pitched noises, tested via whistles made by

Messrs Tisley and Co, Brompton Road. Over the course of a week, 9,337 people went

home with some trivial information about themselves, and Galton amassed the

largest dataset of human characteristics ever compiled up to that time – and a stack

of cash.

There is nothing new under the sun. In the past decade, millions of punters have

parted with their cash and a vial of saliva, and in exchange they received some

information about their DNA. Our genomes are a treasure trove of biological data,

and an industry has sprung up to sell products based on our newfound ability to

quickly and cheaply read and interpret DNA.

The biggest of these companies is 23andMe: five million paying customers since

2006, usually nosing for clues about their ancestry. Unlike most genetic genealogy

companies, 23andMe also offers health-related information, on traits such as eye

colour, predisposition to a handful of diseases, and the tendency to puke when

drinking alcohol.

As with Galton's scheme, 23andMe was never interested in your personal history or

your eyes. What it wants is to own and curate the biggest biological dataset in the

world. So it was no surprise when the company announced a $300m (£233m) deal

with pharmaceutical mammoth GlaxoSmithKline last month to develop drugs based

on the data you paid to give them. This is not illegal in any way. 23andMe told users

that it was planning to do this, and in 2015 had done something similar, but on a

smaller scale, concerning Parkinson's disease. The new deal is the biggest

commercial venture of its sort so far.

This is all unknown territory, and warrants serious thought by regulators as well as by

customers. 23andMe is unambiguous about its plans: board member Patrick Chung

told Fast Company in 2013: "Once you have the data, [the company] does actually

become the Google of personalised healthcare." Genomes can be mined for

subtleties that only become visible with such voluminous data. l've little doubt that

interesting science will emerge from this, and new drugs may well be developed to

treat awful diseases. I also have no doubt that these drugs will be sold back to you.

By buying into 23andMe you are not a consumer or user, you are in fact the product.

Again, 23andMe was explicit about this, and gave all its customers the option of not

giving up their genomic data to commercial ventures beyond their control. But of the

five million people on its database, more than four million did not opt out, and their

data is now fair game. By tinkering with some fun ancestry trinkets, you relinquish

control over information that is unique to you, and allow it to become a commodity to

be traded.

The concerns this raises are similar to many of those created by our new online lives:

privacy, data breaches, security, anonymisation. lt hasn't happened yet, but can

genome data held by private companies be stolen, or de-anonymised? Concerns

about the potential discriminatory use of personal genomics by insurance companies

are well founded. There's no clear pattern of how insurers will or can use information

from genetic tests in assessing life cover, but at least in the US, they are entitled to

demand medical records, including details of inherited predispositions to particular

diseases.

Can information in these databases be subpoenaed? Earlier this year, an openaccess

genealogy database was used to solve a series of decades-old crimes. The

prolific American murderer and rapist known as the Golden State Killer was identified

after a genetic profile from a 1980 crime scene was uploaded to a website called

GEDmatch. Amateur sleuths constructed a family tree that within a few days

identified 72-year-old former police officer Joseph James DeAngelo, whose identity

was confirmed by secret collection of DNA samples from his rubbish and the door

handle of his car. The outcome may represent justice long overdue, but the methods

represent an ethical minefield.

In short: if you really want to spend your cash to discover that you are descended

from Vikings (spoiler: if you have European ancestry, you are) or you have blue eyes

(try a mirror), go ahead. But be aware of what you are really giving up, and consider

the potential risks if things go wrong.

Twenty-five years ago, the fictional potential of DNA was revealed to the world in

Jurassic Park. Resurrected dinosaurs are never going to happen – DNA is robust, but

only over hundreds, thousands, or hundreds of thousands of years at the very most,

not the 66m required for a sample of dinosaur genome. In reality, the wonders of

modern genetics continue to transform science and society in unpredictable ways.

But the moral core of those films – Dr lan Malcolm, played by Jeff Goldblum – can

still teach us something. He is cynical and refuses to be bewitched by the spectacle.

"Don't you see the danger inherent in what you're doing here," he warns. "Genetic

power is the most awesome force the planet's ever seen but you wield it like a kid

that's found his dad's gun."

^{Rutherford, A. (2018). DNA ancestry tests may look cheap. But your data is the price. The Guardian, August 10, 2018.

https://www.theguardian.com/commentisfree/2018/aug/10/dna-ancestry-tests-cheap-data-price-companies-23andme

[accessed: 26 October 2019]}

Working with the text

Outline Rutherford's observations on private DNA tests and the concerns he expresses.

Analyse how the author raises the readers' awareness of the implications of DNA testing.

(25 BE)

Composition

Choose one of the following tasks.

(25 BE)

2.1

"In reality, the wonders of modern genetics continue to transform science and society in unpredictable ways." (II. 68-69)

The author of the article, Adam Rutherford, runs the blog Science Matters and asks his readers to contribute.

Referring to the statement above, write a blog entry discussing opportunities and challenges in the field of genetic engineering.

2.2

Using the message of the cartoon as a starting point, assess to what extent people's private lives will be affected by technological developments in the future.

Source: https://www.slanecartoon.com/media/b3be49d8-1ea4-4a90-92fd-4cf12a3d903c-dna-test?hit_num=3&hits=4&page=1&per_page=50&prev=5f433234-03aa-4935-9d12-228d1cd79d4a&search=DNA

2.3

As a student at an international school in Germany you have been asked to deliver the graduation speech. You wish to focus on the notion expressed in the quote.

"I believe that every right implies a responsibility; every opportunity, an obligation; every possession, a duty."
John D. Rockefeller (1839 - 1937), billionaire businessman and philanthropist

Write your speech.

^{Source of quote:

https://www.brainyquote.com/authors/john-d-rockefeller-quotes

[accessed: 4 October 2021]}

A1 Working with the text

Inhaltliche Reichhaltigkeit und Textstruktur: 10 BE
Sprachgebrauch/Sprachliche Korrektheit: 10 BE
Ausdrucksvermögen und Textfluss: 05 BE

A2 Composition

Inhaltliche Reichhaltigkeit und Textstruktur: 10 BE
Sprachgebrauch/Sprachliche Korrektheit: 10 BE
Ausdrucksvermögen und Textfluss: 05 BE

50 BE

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A1: Working with the text

Note:
Our solutions are listed in key points. In the examination, full marks can only be achieved by writing a continuous text.

the article „DNA ancestry tests may look cheap. But your data is the price.“ by Adam Rutherford appears on August 10, 2018 in The Guardian
the text is introduced by looking at the International Health Exhibition in South Kensington, London, back in 1884
the exhibition included numerous hygienic objects, one of them being „the Anthropometric Laboratory“ (l. 4)
like Dalton in 1884, the respective 23andMe company also works in the field of genetic genealogy

Introduction

with the help of his machine „the Anthropometric Laboratory“ (l. 4), the natural scientist Francis Galton records a wide range of properties about the participants, which are then available to him in the form of valuable data
in the course of this paper, Rutherford states that behind the alleged aim of such companies to give participants added value by finding out valuable information about themselves is pure calculation and greed for profit
companies like 23andMe are interested in making a profit from the ever-growing database, pretending to offer added value to participants by supposedly providing them with valuable information about themselves
there is no question that the welfare and data protection of the population is subject to the generation of monetary returns
the fact that 23andMe has decided to work with GlaxoSmithKline, one of the world's largest pharmaceutical companies based in the UK, is hardly surprising against this background
however, instead of accusing the company of a lack of transparency in its collaboration with GlaxoSmithKline, Rutherford is concerned about another factor
the author of this article worries about the question of whether the highly sensitive data on the genetic make-up of countless customers can be passed on to third parties and even be used to commit fraud? Although this is pure speculation at this point, Rutherford's unease is not entirely unjustified
Rutherford is also alarmed about the fact that there is no uniform or clear regulation on whether insurers receive information from companies like 23andMe on the genetic make-up of their insureds when it comes to calculating life insurance policies

Rutherford's observations on private DNA tests and his concerns

by stating that it is neither confirmed nor disproved that, for example, health insurance companies can access the data on the genetic make-up of their policy holders, the author arouses the readers' alertness
Rutherford proves, by using the case of the convicted murderer and rapist of the Golden State Killer, that already once the genetic data of a human being could be produced within a very short time and without any problems. (l. 54-55)
all this had only been possible because samples had apparently been secretly taken from the perpetrator's household waste. These had been compared with the genetic profile of a former convict, which „was uploaded to a website called GEDmatch“ (l. 55-56) and the killer had been caught

How the author raises the readers' awareness of the implications of DNA testing

in general, Rutherford urges caution and encourages scepticism when it comes to disclosing sensitive inheritance and genetic data freely on the internet and in the course of studies
he suspects that the amount of misuse of personal data is far greater than we realise
he therefore advocates being aware of the power that companies have with such amounts of data and being correspondingly reflective in dealing with one's own genetic information

Conclusion

A2: Composition

2.1

it is no longer a secret that the topic of genetic research is a controversial one and sometimes causes tempers to flare up
however, the following blog entry deals with the extent to which genealogical research and the associated collection of sensitive data can become a challenge and a danger
the most important prerequisite for being able to assess and overview a topic is that one is not afraid to repeatedly change one's perspective in the course of dealing with the topic and to question the seemingly obvious
the basis of this article is Rutherford's statement that "in reality, the wonders of modern genetics continue to transform science and society in unpredictable ways." (II. 68-69)
the latter statement must be addressed in the context of the question of opportunities and challenges in the field of genetic engineering

Introduction

by stating that "in reality, the wonders of modern genetics continue to transform science and society in unpredictable ways." (II. 68-69), Rutherford makes a bold statement
from the author's quotation, it is clear that he is more sceptical than sympathetic to the development of genetic research
the main message that emerges from Rutherford's statement is that scientific achievements, in addition to their contribution to society, always involve a degree of risk
in his opinion it would be presumptuous not to take into account the downsides and sacrifices which come with research

Main part: Rutherfords statement

Rutherford questions whether the highly sensitive data on the genetic make-up of countless clients can be passed on to third parties and even used for fraudulent purposes? The fact that there is no conclusive evidence against such a claim makes the author uneasy and sceptical about genetic engineering
he is also understandably concerned that there is no uniform or clear regulation on whether insurers receive information from companies like 23andMe about the genetic make-up of their policyholders when it comes to calculating life insurance policies
that genealogy is necessary to cure diseases like cancer is beyond question. But the fact that the subsequent use of highly sensitive and personal data is so poorly monitored or clear casts an uneasy light on research in this field

Con: challenges of genetic engineering

as already mentioned above, genealogical engineering makes it possible to cure serious diseases in the first place
it may also be a beneficial point that study participants can, for example, learn more about themselves as a person and thus develop a stronger sense of self

Pro: opportunities of genetic engineering

Rutherford proves, by using the case of the convicted murderer and rapist of the Golden State Killer, that already once the genetic data of a human being could be produced within a very short time and without any problems. (l. 54-55)

significant example that speaks against genetic engineering

in my opinion, the biggest challenge in dealing with sensitive data collected from genealogical research is the lack of transparency for ordinary citizens
on the other hand, this lack of transparency can be applied to numerous sectors, so it is not only a problem that arises in the field of genetic engineering
what can be improved, however, is that clearer rules and measurability are established for the handling of genetic engineering data, which companies must then also adhere to

Personal opinion and conclusion

2.2

Here we are then.
Let's talk about mankind's reaction to climate change and how to cope with the consequences
Let's start with...
On the one hand / on the other hand
It must be considered
In my opinion / I think, personally, ...
I agree / I disagree

Possible introductions to the topic and the argumentations

the cartoon shows a woman's reaction to a man's marriage proposal
the fact that the man kneels in front of the woman sitting on a sofa and clasps her hand makes it clear that this is a proposal scenario
by answering not with a simple "Yes, I want to marry you" but with the words "The answer is yes. Subject to the usual credit checks and D.N.A. profile", the lady shows how personal data could be visible even to close people like partners in the future

Cartoon:
introduction and short description of the cartoon

obviously, the woman's response is a very exaggerated reaction that takes an incredibly unromantic look at the future
the answer of the lady in the cartoon implies that she only says yes conditionally, because she first wants to find out the creditworthiness and genetic predisposition of her proposed applicant
the caricaturist, however, will have intended exactly the above-mentioned exaggeration effect, since, as is well known, in exaggeration lies the view
since the maintenance and accessibility of personal data is not clearly clarified and secured, a future in which any random person can access private information of his or her opposite is quite conceivable
however, whether people will put factual research above the unpredictable, interpersonal connection in the future is questionable

Comment on the cartoon

we should all concern ourselves with the issue of data protection, especially data that can be used against us in the worst case
at the same time, it is worth advocating that the storage of highly sensitive data on a person's financial and health-related data is secure and, above all, comprehensible to all citizens
information about whether a potential life partner is rich or poor, or what (hereditary) diseases the person may carry, should never take precedence over genuine connection based on mutual love and respect

Conclusion

2.3

Dear fellow students, dear listeners...
the quotation “I believe that every right implies a responsibility; every opportunity, an obligation; every possession, a duty.” by the American billionaire businessman and philanthropist John D. Rockefeller states, that with certain positions and scope for power always comes a corresponding sense of responsibility

Addressing the audience, introduction, referring to the quotation

in particular, large corporations want one thing above all else: to make money and generate growth. The power structure of large companies consists of a hierarchical order in which the top of the company in particular makes and overturns decisions
constant growth not only requires the constant development of the actual company but also buying into smaller companies, which will make the "mother company" even stronger and faster

Main part: the power relations of large companies

owning huge companies comes not only with a sense of rights, but responsibility too. Meaning, as a leader of a big company not only are responsible for her employees but also needs to take her target group (customers) and everyone involved in what you do and decision-making into consideration.
without question you'll have to earn your customers trust at first. The real question is: What are the keypoints whether consumers decide to support a company or not?
as a company, whether big or small, it's important to be as transparent as possible regarding the creation process of the product, work conditions, etc. towards customers.
also, companies need to continiously prove they're taking customers feedback into account and will never stop applying the rule "customer is king". They can do so in focusing on their target group and putting customer needs and friendliness first, act upfront and transparent when required and take action if needed.

The duality of rights and duties

in conclusion, Adam Rutherford emphasizes the importance of responsible handling of one's sensitive data such as ancestry and DNA data, and this applies equally to both individuals and companies.
particular caution should be exercised in the presence of conspicuously favorable contractual conditions, but also in general, the customer should always satisfy himself of the transparency and ethical defensibility of the company theory.
thank you for your attention.

Conclusion and addressing the audience

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Teil A: Text production

Adam Rutherford: DNA ancestry tests may look cheap. But your data is the price

Weiter lernen mit SchulLV-PLUS!

A1: Working with the text

A2: Composition

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Adam Rutherford: DNA ancestry tests may look cheap.
But your data is the price