M.J. Conaway, Ph.D.

BEHP 408 SP 17 001 Final Book Review

An Ethical Analysis of The Rosie Project

The Rosie Project by Graeme Simsion1 is about Dr. Don Tillman, a genetics

professor at a university who decides he is done with the dating scene and he wants to

find a wife via the scientific method Don has an eccentric personality that, to his

psychology faculty friends, is suggestive of a very high functioning form of Asperger's

syndrome. He micromanages his daily life, including his time for bathing. In order to find

the perfect wife, Don launches The Wife Project. For that project, Don develops a thirty

page questionnaire for women to complete so it will screen the ones that are not perfect

for him. Thus, he will not waste his valuable time. 1

Over the course of this project he meets Rosie, a doctoral student in psychology

at the same university, whom he mistakes as one of the ladies who completed the

questionnaire. After the initial date, Rosie tells him that the man who raised her is not

her biological father. To discover the identity of her real father, Don and Rosie

collaborate on a joint undertaking called The Father Project. Over the course of that

project, a romantic relationship develops between them. 1

However, during the course of The Father Project, as well as throughout the

entire novel, Simsion1 presents many scenes that are richly embedded with multifaceted

and complicated ethical challenges and numerous ethical violations. 2-7 The whole novel

is narrated from the obsessively logical and maddeningly utilitarian point of view of Don

Tillman. For Don, everything is a fact to be analyzed. In his mindset, all is black or

white and on or off. For Don, there is no gray area, fuzzy logic, or even empathy. This

merciless way of thinking is even applied to his students who make unsound ethical
decisions in their academic efforts.1

Ironically, a blatant ethical violation that was described numerous times is the fact

that the collection of the questionnaire data and tissue samples was often done

clandestinely and without obtaining valid informed consent. 3-6 Even more grave, there

had been no IRB approval 5 for either The Wife Project or The Father Project. As a

result of such ethical lapses, especially with regard to The Father Project, Don Tillman

very nearly destroyed his research career. He was saved by seemingly serendipitous

intervention by a renowned investigator who had been seeking the data the Don had

been unethically collecting. Nevertheless, upon discovering the identity of the biological

father of Rosie, Don Tillman sums up the triumph over tribulation by the following

observation.

After all the blood collecting, cheek swabbing, cocktail shaking, wall
climbing, glass collecting, flying, driving, proposal writing, urine mopping,
cup stealing, fork wiping, tissue retrieving, toothbrush stealing, hairbrush
cleaning, and tear wiping, we had a match.1

Certainly, the Nuremberg Code3, the Declaration of Helsinki4, the Common Rule5, and

other codes of research ethics6 provides guidance for assuring that participation in

research is voluntary and that the risks of research are minimized. Common central

tenets to all codes are that research study participation must be voluntary, informed,

and free of coercion, and that a participant has the right to withdraw from a study at any

time.3-6 Indeed, because such core tenets were blatantly disregarded by Don Tillman,

both projects described in the novel violated these codes of research ethics in many

different ways.

Despite overarching consensus that a person donating a tissue or genetic

sample has a right to privacy thereafter, complications still arise. This includes
scenarios such as when the identity of the donor is released anyway, 2,7 which happened

on more than one occasion in the novel. Yet, even in situations of greatest

transparency, it is often difficult for a researcher to articulate exactly what the participant

is donating That is because ownership of a particular biological specimen entails many

more rights than just physical control.2,7 Since every issue cannot always be explained

to each participant, problems of obtaining valid informed consent arise as well. 2,7 Yet, in

many cases, Don blatantly lied about his reasons for collecting the genetic material.

Nevertheless, there are researchers who argue that specimens should be under public

ownership.2 Were specimens indeed publicly owned, the ethical constructs of the novel

would be dramatically different.

A further ethical dilemma presented in The Rosie Project is the return of results.

Returning results can, among many other problems, conflict with the right to privacy of a

participant.2 If genetic testing is performed, as Don Tillman does in the novel 1, then

investigators may discover health information about participants. Frequently, however,

there is no way to provide participants with such information that is ascertained from the

samples they may give for an ethically sound study.2

Another ethical challenge to consider from the novel is that Don Tillman, with all

of the specimens collected, may want to conduct a novel, future study using them. 2,7

Given the incapacity, unavailability, or geographic dispersion of the donors, he would

have no sound, practical way to give them information about that study and obtain their

valid informed consent.1,5

In the novel, the genetic data collected by Don Tillman to ascertain the biological

father of Rosie was never anonymized. However, Eriksson and Helgesson 2 admonish
that anonymization should never be a default alternative to requests for withdrawal.

They assert that anonymizing samples negatively impacts research. 2

Moreover, as Andrews and colleagues7 articulate, sensitive relationships among

family members have historically entailed complicated and often fractious legal

disputes. In particular, the courts have struggled with issues such as characterizing the

relationship between child and parent, and how should parentage with its congruent

rights and responsibilities be determined.2 In the novel, Don Tillman poignantly makes

the following summary observation about these legal and ethical conundrums once the

genetic match was found.

Rosie had wanted to know who her biological father was. Her mother had
wanted the identity of the man she had sex with, perhaps only once, on an
occasion of emotion-driven rule breaking, to remain a secret forever.1

As such, the right of an unwed mother to keep the identity of the father of her child a

secret forever must be considered.7 In the case of Rosie and Don, this right was

disregarded. Then, the question must be posited of whether or not Rosie should be

legally entitled to retroactive child support or prospective inheritance from a man with

whom she has had no social relationship just because a DNA test says he is her

biological father.7 Finally, the rights and obligations between Rosie and the man who

raised her, Phil Jarman, must be considered.7

Still another ethical dilemma presented in the novel is that of the induced

behavioral transformation of Don Tillman. Assuming that Asperger's syndrome has a

genetic component and that such behavioral sequelae deviate from normal human

expression, the effort to transform Don into something he is not seems to be a variant of

a eugenics project.7,8 According to Wilkinson8 , "eugenics" is concerned with producing

fit offspring. What is meant by a "fit offspring" necessarily opens many cans of worms.

If Don is considered unfit due to his atypical and eccentric behavior, then the question

posits itself about whether he should be "fixed".8 Even though the novel has a happy

ending, the question remains of whether Don should be prevented from reproducing so

that he does not pass on such traits to his offspring and descendants. 7,8 Then, the

question subsequently arises about whether such atypical people should be subjected

to mass sterilization without regard for their individual autonomy.7,8

The Rosie Project is hilarious, witty, poignant, peculiarly romantic, and has

interesting twists on the plot. It is full of cases involving intersectional problems of

research, genetics, ethics, and law upon which to reflect. Many ethical dilemmas are

presented with utmost subtlety and implication throughout the narrative.

On a personal note, this reviewer can very much relate to Dr. Don Tillman as

well. To find the perfect wife via the scientific method would be immensely convenient.

Yet, this world is not set up to provide such accommodations in any way.
References

1. Simsion GC. The Rosie project: #1. New York: Simon & Schuster, 2013.

2. Eriksson S, Helgesson G. Potential harms, anonymization, and the right to

withdraw consent to biobank research. European Journal of Human Genetics,
2005; 13(9):10716. doi:10.1038/sj.ejhg.5201458

3. The Nuremberg Code. In: Trials of War Criminals Before the Nuremberg Military
Tribunals under Control Council Law No. 10. Volume 2. Washington, D.C.: U.S.
Government Printing Office; 1949:18182 [Online]. Available:
http://www.hhs.gov/ohrp/references/nurcode.htm.

4. World Medical Association. Declaration of Helsinki - Ethical Principles for

Medical Research Involving Human Subjects, 2013. Available online at:
http://www.wma.net/en/30publications/10policies/b3/index.html

5. Department of Health and Human Services, National Institutes of Health, and

Office for Human Research Protections. The Common Rule, Title 45 (Public
Welfare), Code of Federal Regulations, Part 46 (Protection of Human Subjects). [
Online] June 23, 2005. Available:
http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm.

6. Council for International Organizations of Medical Sciences, in collaboration with

the World Health Organization. International Ethical Guidelines for Biomedical
Research Involving Human Subjects. Geneva, Switzerland: CIOMS and WHO;
2002. [Online] November 2002. Available:
http://www.cioms.ch/frame_guidelines_nov_2002.htm.

7. Andrews LB, Mehlman MJ, Rothstein M. Genetics: Ethics, Law, and Policy, 4th
edition. New York: West Publishing, 2015.

8. Wilkinson S. Eugenics talk and the language of bioethics. J Med Ethics,

2008;34:467-71.