Our analysis showed that (I) the groups share deep concerns regarding the DTC genetic testing service; (II) the groups differ in how they represent the prospective users; (III) they differ in how they deal with their concerns with regard to their representation of users; (IV) the design decisions differ accordingly. These themes will be elaborated in detail in the following sections. For references to the data and quotations, the group is indicated as EG (experimental group) or CG (control group) and the number of the extract is added. The excerpts presented from the transcripts have been translated from German to English by the first author.
4.1 Shared Concerns
Both the experimental group (EG) and the control group (CG) shared several concerns with regard to the introduced DTC genetic testing service:
Revelation of Serious Results.
Both groups identified early on that “for some people a genetic test is a very serious matter; for others it’s more a gimmick” (EG:109). While the groups considered the rather harmless information (like Ancestry Composition, Drug Response, and Traits) to be revealed straightaway, information regarding Disease Risk and Carrier Status should be taken seriously and processed differently.
Both groups struggled with how to reveal such sensitive information and if the Genetic testing company is generally allowed to share such information with people. Both share their concern that the results might cause panic, psychic stress, or upset a person, when revealed via an online service. Both groups indicate on several occasions that they want to include some sort of psychological support, e.g. psychological counseling, reference to support groups, support by phone, or aftercare in general.
The groups share the concern with regard to undesired consequences, but the type of consequence differs between the groups. CG referred to rather extreme consequences due to how people would react after learning about the results (e.g. that a person would commit suicide, give up their child for adoption when the results are bad, or even perform an abortion). EG considered consequences in terms of what the results might mean for the person in their future (e.g. an unwanted result in a paternity test, or having a high probability regarding Alzheimer’s or cancer).
Both groups identified that the information is quite complex and that laypeople probably need additional information and a comprehensible visualization. Both also realized that they as designers also struggle to understand the specific terms, which they feel is necessary in order to structure and cluster the data for laypeople. The experimental group went one step further in discussing that not only the lack of knowledge, but also the existence of prior knowledge (i.e. experts) should be addressed, because those “would probably rather understand professional jargon” (EG:314).
Data Access by Third Parties.
The groups identified potential interests in the data by third parties, e.g. insurance companies, physicians, bone marrow database, or research (CG); employer, anyone else besides the donor (EG). In this regard, both groups also discussed the risk that an unauthorized person might send a sample of someone else.
4.2 Representation and Attitude Towards Users
The way the two groups talked about the users differed noticeably. The representation of users remained very abstract in the control group. When they discussed who would want to do such a genetic test, they referred to “people who panic to get sick” (CG:43); “curious” (CG:44, 179), “who have been adopted” (CG:45, 48), “who consult online docs” (CG:49), “overcautious” (CG:172), “doctors could use it for their patients” (CG:173), “hypochondriac” (CG:307,370), “parents who want to test the DNA of their children” (CG:503). The representations remained rather stereotypic without deep discussion regarding the characteristics of the person or further motivational aspects.
The experimental group didn’t represent the users in such a stereotypic way. The discussions evolved here rather around the underlying motivations, interests, characteristics, and needs of people, e.g. “What would the customer, who doesn’t know exactly why he actually makes the test… what could be important to him and what would he want to know” (EG:111). The discussions with regard to a person’s background and characteristics were in all more detailed: “adopted child, who wants to know about their medical history and origin of the family” (EG:49); “in case a disease runs in the family, and one wants to know if one is affected” (EG:64), and with reference to a review: “Right here with schizophrenia. That he knows he does not have it so he’s not schizophrenic. But he’d just like to know whether his children could get it.” (EG:260); furthermore, a person might be interested only in certain information like origin of family - not more (EG:339); “people who have a serious disease” (EG:407); “users with shortcomings” which the student’s would like to address (EG:313); people without specific domain knowledge (“laypeople”), and who might need some anecdotes (EG:314); and “experienced persons” who require professional jargon (EG:314).
Besides the identification of motivations in the reviews, the students of the EG also wanted to learn about the person’s motivations, special needs, and disabilities (e.g. blindness) through some kind of pre-test, which would then lead to an individualized presentation (EG:308). Later in the process they also stepped back again: “We already started with the requirements, even though we didn’t really address the users. Who are those people?” (EG:401), and further: what are their motivations (EG:403) and what additional information might be important to inquire up-front (EG:409) that could be used for individual representation (EG:414).
4.3 Paternalism vs. Autonomy
As already mentioned, the students struggled when it came to the revelation of serious results. The control group took quite early a rather paternalistic approach, in which the access to some results is denied. “I just had an idea… there are these online tests, so that you might ask some basic questions in advance… and then you say: No, sorry. You are not getting the results. Get in touch with our doctors or whatever. Something like that.” (CG:26). Initial questions arose regarding the legal situation and if it is allowed to tell people their results “just like that” (CG:58), or whether some aspects would be excluded, a question which was met with the counter argument “How so? You always have a right to information” (CG:61). However, this wasn’t considered further after a student used an analogy: “Yes, but for example I know with Parkinson tests, they have to go through [psychologic counseling] and so forth before they learn, if they have it or not. And if the psychologists detect that the person is too unstable to learn that, then they won’t. That’s why I can’t imagine that all this information can be released just like that.” (CG:62) The group then developed their idea further that the service would offer two packages, where the one with Disease Risk and Carrier Status would be only available in cooperation with a doctor. They planned to grant only the specific doctor access to this kind of data (CG:76).
Some of the students in the control group noticed, that this would change the company philosophy, because it is a direct-to-consumer service after all (CG:70,83) and that changing the process the process might be bad for their business (CG:110, 112). They raised concerns whether they were allowed to make these kind of decisions (CG:151). However, in the end they considered it as important and in the person’s interest that the doctor is involved (CG:286): “the most important things that we really have in mind… what we are talking about the whole time, is to protect the user from himself and from the information he could get.” (CG:264). Moreover, not only the design team is able to decide for the person, the doctor can do that as well: “Then the doctor can, … perhaps he knows his patient well… he can perhaps say directly: No, no, no, you don’t want to know the disease risks” (CG:280).
When one student asked, “If this is the decision of the customer? […] who wants to get the results” (CG:288, 292), he was quickly overruled: “Well, bad luck, then go somewhere else” (CG:289); “Yes, but it’s for his own safety.” (CG:293). One student elaborated further on the protection with an analogy: “There are many things that are made for the protection of all of us, for example that we must fasten our seatbelt, etc. If I fast my seatbelt or not is still my own decision, but basically it is said you need to buckle up while driving, otherwise you could fly through the windshield.” (CG:296) The argument that the person could sign an informed consent was also overruled, because “But then he can also be quite unstable or so… I think that one always believes: I can take it, I can manage it.” (CG:300). The control group decided in the end that every person has to register and if they are interested in Disease Risk or Carrier Status, they have to cooperate with their doctor, who also has to sign a form.
The experimental group also had the idea to involve doctors or experts who might initiate psychological counseling (EG:115), identify the person (EG:117), or interpret certain test results: “bad news, yes… these diseases etc. that they are best interpreted by physicians” (EG:120). One group member early raised the concern that this would “depart from the business idea that they have” (EG:118). The group then changed the involvement of experts to be on a voluntary basis (EG:126) and that they would make recommendations who to contact (EG:131). The question if it is allowed or if someone is entitled to reveal such serious information in an automatized way (EG:132) and if this is ethical were met with “Yes, but he wants to know” (EG:133) and “He pays for it. He wants that.” (EG:135). Unlike the control group they dismissed ideas with paternalistic tendencies for the sake of respecting the person’s decision and gave the individual person and their perspective priority.
4.4 Design Decisions
Changes with Regard to the Testing Process.
Although both groups considered to change aspects in the testing process of the DTC service, the underlying motivation differed and can be related to the previous theme. Both groups consider to include some kind of pre-test or application process. This was motivated in the CG in order to determine whether the person can handle this information. The pre-test was later obsolete, because according to their final design deliberations access to serious information was only granted through the doctor, who would then determine whether the person can handle it or not. The pre-test was considered in EG in order to determine an interest in specific information due to previous conditions (e.g. specific drug responses due to a certain disease) and to identify special needs of the person, which would then be addressed in the design; e.g. if the person is visually impaired.
Both groups considered to involve a doctor or an expert and mentioned that this could ensure the authenticity of the sample sender. However, this was not the initial motivation for the involvement, which differed between the groups. While the CG wanted to involve the doctor in order to reveal serious information in general, the EG wanted the doctor or expert to give additional information with regard to the results, interpret serious results, and initiate psychological counseling if necessary. Additionally, in the end only the control group kept the idea in their final design deliberations.
In line with the rather paternalistic approach, the CG tended to overload people with information in order to prevent them to sign up for this test thoughtlessly: “Rather put too much information than having the user click through it too easily” (CG:206); “I’d rather see to it that… that with the registration process, that in a sense scruple is generated” (CG:328). They recognized that it requires extra effort to undergo for example some sort of personal identification procedure (CG:329). They also considered that expressing additional consent that the person is aware of legal issues by an extra click might be contrary to usability, but they wanted to include that anyway “Just to make sure” (CG:438). The EG didn’t mention usability aspects explicitly, but discussed that they want to provide individualized visualizations with regard to the specific needs (e.g. auditive, textual, graphical, or a personal contact) and according to the person’s specific interests: “…not some kind of heap of graphics and data, but to say, well, this is something important or this may be of interest for you…” (EG:111).
The CG elaborated several design dimensions with regard to safety aspects. This addressed the system’s security (restricted access, authentication, risk of having data online, ensure protection on a personal and data level). With regard to protection, the group wanted to make sure, that doctors will be involved, when health related results are to be revealed. Their solutions included an identification process and some kind of key encryption procedure to protect the data. The functionalities discussed in the CG dealt with Login, identification procedure, encryption, PDF export, anonymization, and verification. The EG focused not that much on technical solutions, although they also discussed some kind of personal identification procedure. Their design addressed functionalities like contact options for bi-directional communication with the company, the opportunity for ratings and reviews, provide communication platform between persons, filtering the results based on a person’s interest and data.
The main task for both groups was to develop a platform that should be used to publish the genetic testing results. The outcome with regard to the visualization differed noticeably. The CG excluded the two categories Disease Risk and Carrier Status completely and didn’t discuss the visualization of the remaining categories in detail. They wanted to show certain information in a table on demand and if desired a person can get further information on a specific topic through hyperlinks. The EG discussed extensively how they want to visualize the information: e.g. visual and auditive, in a sensitive way, depending on the individual category (in a cheerful or serious manner), using some kind of color scheme (including the consideration of different cultural connotations), using different modalities (e.g. tree, table, list), using metaphors (e.g. traffic light, body parts, globe, maps).
4.5 Group Presentation
Due to the time constraints, the ill-defined character of the design task, and the consequential extensive discussions within both groups, the final presentation of their design focussed on specific aspects they would address when developing the platform. Table 2 gives an overview about the aspects the groups presented: